WEDNESDAY, OCTOBER 14
Charles came home!
Yep, 12 weeks and one day after his stroke. Prayers arrived and were answered in many forms over those 12 weeks and we are grateful for every single one.
I got notified that he was coming home last minute; we (and his therapy team) were anticipating a later discharge date. But his insurance put pressure on the hospital and, voila! here he is.
He will still be in therapy nearly all day, most days. The difference is that he will be getting the therapy at home for now, with an anticipated return to the rehab center for out-patient therapy after a few weeks of home visits. (And a huge difference for me is that I won't have a four-to-five hour chunk gone from each day to make the drive to go visit him.)
It was wonderful to see his mobility in the house. We have ten steps to get to our front door, then a narrow set of about 12 steps to the landing, then another 12 to the main floor. Up and down; he's slower than he used to be, but navigates without trouble or pain. And he wants to drive to a local track tomorrow morning to work out!
He also got a job offer. Pretty good, to have that happen within five hours of arriving home, and without advance notice to anyone. But his reputation as a teacher has spread and someone organizing a science class for a "microschool" program came over to ask if he could do it. Bodes well for his confidence about recovering.
A final note: just as we were leaving - literally, loading the car in front of the hospital - a priest approached me and asked if I'd like to receive the Eucharist, suggesting that it would sustain me on this day of transition. (Charles had received earlier in his room.) I accepted gratefully and the girls received from their seats in the car. Standing there I was reminded of all of the times that we had received together during this journey and what a blessing it has been to encounter Christ in all of the people who have helped along the way. I was also reminded of a quote from Saint John Paul II, which we used in our wedding program:
Love... recurring in so many manifestations throughout this journey, sometimes wise, patient, and kind; sometimes weary and imperfect. But present throughout. We are so grateful.
SUNDAY, OCTOBER 11
Charles came home for about an hour, with two of his therapists, for a home evaluation. His first time home since July 16, when we left on vacation! See photo below for Puck's enthusiasm to see him. :-) Charles was happy to see the dogs, too, to lie in his own bed, and to show the therapists the stock of science equipment that he uses for his classes.
Afterward, they gave us a list of modifications that we'll temporarily need to make to the house; simple things that will limit his hazards. The awesome part of the visit was Charles' independence. From his hospital bed to the car, down the sidewalk and up both the front stairs and the inside stairs, into every room of the house, back down and out and back to the car, then back into the hospital he was completely independent. He had support available if needed (me and the two therapists), but he didn't need any help at all, not physically and not even with reminders. I expected him to be tired, but he's been working hard with these long days of therapy and wasn't even slightly fatigued.
An awesome milestone!
FRIDAY, OCTOBER 2
Our 'date' went well: Charles chose the restaurant that catered our wedding reception and two therapists and the girls came along. His job was to plan and execute the whole thing, from picking the place to getting directions, walking several blocks from where we could find parking to the restaurant, navigation of crossing a busy street at a slower pace, ordering, staying focused in conversation, etc. He did perfectly from the perspective of standards that he had set before he left and in the process he and the therapists identified additional goals to work on.
We're found that it is an ongoing adjustment for the girls to see these changes in their Dad. As adults, we are able to mostly focus on the improvements, but as kids, they just want Dad back the way he was and they are a bit impatient with anything less. He's more short-tempered with them, and they with him, so there is family healing still needed and we are looking forward to having the time together to get us there.
THURSDAY, OCTOBER 1, 4AM
Recent photos (lookin' good, handsome!)
WEDNESDAY, SEPTEMBER 30, 2PM
Charles' therapeutic team met today: two Occupational Therapists, a Physical Therapist, a Speech Therapist, and a Neuro Psychiatrist. I've met them all before and they are all simultaneously nice and extremely competent, individually and as a team striking a great balance between kindness and appropriate pushiness. Best, they are really diligent about paying attention to the small things and in including Charles in their decision-making processes. As they said, he is not only part of the team, he is the most important member. Their approach to therapy as a participative, not directive, process therefore seems perfectly suited for his healing. Further, the conversation in this team meeting was perfectly timed to motivate his continued healing as he has begun to express increased (and understandable) frustration with being told what to do.
So, the rehab update is that he continues to improve, especially with the physical elements of his recovery. He is on the path to full independence and isn't far from it. He remains challenged in the areas of focus and so the discussion today centered on the difficulty in quantifying gains in this area, which is so much harder to measure than, for example, the time it takes him to do a physical task. As mentioned before, distractions have disrupted his rest times and thus created a problem for his recovery, pushing his initial discharge date back a week. Today the team (including Charles) decided to revert back to more basic therapies to focus on techniques that he can independently use to facilitate his ability to focus despite distractions. Their hope is that with a return to these therapeutic "basics," he will regain some of the lost recovery time and then quickly build the skills that he needs for his complete healing.
In the bigger picture, he looks great, still has a huge appetite, and seems much more like himself than he did not so many weeks ago. I ache for his frustration; at the same time, it seems so much more normal to be frustrated by a lack of full independence than to accept it complacently, so this new stage is clearly a sign of continued healing. He asked me to bring him library books about cognitive healing so that he could reinforce his own focus issues even when not actively with one of his therapists and it was great to see him taking ownership of his own recovery, another sign of continuing healing.
I spent quite a bit of time at the hospital this morning. After returning home, I got a surprise call from him, asking me for a date! He remembered many of the details of our first date and is working to recreate some of them, which is super sweet. Of course, this time we will have an Occupational Therapist and two awesome girls as escorts, the former there to help make sure that he focuses enough to navigate the various tasks associated with the outing.
WEDNESDAY, SEPTEMBER 23, 7AM
Another great visit with Charles last night. He called me during the day to report that he has officially retired his wheelchair; he now uses a walker. Hurrah! When we arrived he practically jumped up (well, not really, but relative to the ten minutes it used to take just to get him sitting) and walked himself down the hall to have dinner in the common room with us. Then he wanted to go to the physical therapy room and show off how well he does stairs! (The nurses wouldn't let him; there were no therapists around and they don't have that authority.) I love his enthusiasm, confidence, AND new abilities.
This is officially ten weeks since we first arrived in Denver and Charles lay in Critical Care, completely non responsive, on breathing and feeding tubes. How terrifying that was and what a journey these ten weeks have been!
Ernestine (Charles' mom) flew home this morning, after going through so much of this journey with us. Fortunately, she never had to see him completely non responsive, but she did see his early delerium, his nasty mood swings, and many agonizing and hard-won milestones along the way. We appreciate her love and dedication to Charles, her significant investment of time, and her quick response to this sudden crisis.
Visitation and calling restrictions (above in italics) are still in place; the rehab team feels that they are essential to Charles' healing. Charles completely approves of these restrictions and was part of their design, but he (and I) are getting a surprising amount of resistance to them. I was there yesterday when a call came through and heard the conversation; a loved one who called when Charles should have been resting and complained of "mixed messages." Charles wearily repeated the same rules and when he got off the phone complained, "I have been having this same conversation for three solid weeks!" One of the doctors on his rehab team has offered to speak directly to anyone still concerned; please contact me via email and I will connect appropriate inquiries to her so that Charles can focus on his healing.
Many prayers of gratitude for the successful milestones in this journey! Charles still hopes to help coach basketball later this year - fingers crossed for that...
SUNDAY, SEPTEMBER 20, 8PM
A glorious visit! Charles decided to show off and (nearly) effortlessly stood up and used a walker to walk around his room. This violated the hospital's safety rules, but he was clearly confident about it and that was awesome to see. Fantastic! Swim therapy begins tomorrow and he is excited; I think it reminds him of his post knee surgery recovery in college.
FRIDAY, SEPTEMBER 18, 8AM
This is the sign that Charles' therapy team put on his door, after consultation with him about the distractions that have led to a week-long delay in his projected recovery. It requests phone calls from family and close friends only, and those only between 5PM and 9PM, California time. (Note that he also has a visiting hour from 6-7PM, so it is best to avoid that time, too.)
Because his brain needs to rest, his calls and visits should be focused on positive, light topics. Remember that he had his stroke when his blood pressure spiked because he got worked up about the Planned Parenthood videos. Politics, family drama, financial woes... anything that would keep him up at night worrying should be avoided for a long while. For example, he's always been a worrier and a concerned Dad, but I've learned to be extra-sensitive in reporting what our girls are doing because he seems to worry even more than usual about things that even he wouldn't have blinked an eye at before.
He is working REALLY hard toward a full recovery. The mandatory rest times between therapy during his "work" day are designed to allow his brain an escape from all stimulation, even the happy stimulation of calls and visits from loved ones. One sign in his room states his commitment to "observe scheduled quiet rest breaks between therapy sessions." One therapist likened his work to studying for finals or working on an intense project at a job: at the end of the day full of such mental effort, most people need to "chill" quietly; even a fun family party or event takes energy. (Reminds me of when we were dating and he'd pick me up on a Friday night from work. After a very stressful week, my favorite "dates" were just eating junk food and watching a Sopranos marathon together. :-)
If you are worried that Charles is feeling isolated, be reassured. I was there when the therapy team approached him and he greeted the restrictions with unmitigated relief. He enjoys his visitors but admits that he needs that hour-long limit so that he can say goodbye without feeling rude.
Every stroke is different; Charles' biggest challenge isn't his physical mobility, but his brain's ability to focus. We are lucky; it was a massive trauma, but he is strong and his particular stroke affected his brain in ways that are allowing for quick recovery. For that we praise God every day.
A PS: Medical research supports the need for rest after this type of stroke:
Sleep becomes imperative... The brain needs to rest from all the physical work of creating new neural pathways. The post-stroke patient, like [a] newborn, feels assaulted, but is physically unable to move away from the stress. The only solution is to fall asleep! Here one can see that sleep performs two functions: that of restoration of the brain during slow-wave sleep (Himmanen, 2012) and as a means of controlling one’s environment. REM sleep allows the brain to sort out stimuli and to try and make sense of new input. Learning to think IS exhausting.
Psychologically, the ability to tune out overwhelming stimuli is quite important... to our wanting to grow and develop. Learning that one can have an impact on one’s surroundings is an extremely important developmental milestone in the development of consciousness. Tuning out serves to create a safe environment. A safe environment allows the amygdala to remain calm and to keep from triggering a hyper-vigilant. reactive response to possible danger. When the amygdala is calm, the hippocampus can learn and memorize new information – a vital task for the stroke patient ... (Taylor, 2012, pp. 18-19).
WEDNESDAY, SEPTEMBER 16, 2PM
An interesting and long morning with the therapy team and Charles' neuro psychologist. The long and the short of it is that he is making progress, but it has been slower than expected, and they are especially concerned that he is too distracted, which is affecting his focus. They've actually added a week to his projected discharge date because of this, which is disappointing.
So, the neuro team has reinforced the rules (above in italic) in posted signs; visitors who exceed the number allowed or time allowed will be asked to leave by a newly diligent nursing staff. Further, his phone calls are now limited to the above hours AND to immediate family and very close friends only. They wrote on their instructions, "please encourage friends to send cards and well wishes, but avoid phone calls." I would venture to add "ongoing prayers" to this list of what we encourage.
After the team met, they came to talk to Charles and I about their conclusions. I felt somewhat sobered by their recommendations, but to my (somewhat) surprise, Charles heartily agreed, admitting that phone calls and even arriving mail tends to distract him and stress him out.
(Mail can be sent to our home and I'll bring them to him daily; he tends to worry a lot that he won't remember to ask someone to hang them up, so opening them together seems to relieve this concern. His "wall of love," a visual display of all of the cards he has received both since we've been home and when we were in Colorado, is impressive and growing. He is literally surrounded by expressions of love, which we both appreciate.)
All of this comes within a broader context of much improvement. When we started this journey, we weren't even sure if he would make it and while we saw progress every day, we still lived with a fear for many weeks of an unknown future. He's come a long way, appears very normal (and handsome), remains witty and charming, and is making improvements in all elements of the acute therapy that he is getting. Our goal now is to move toward a new normal for our family, which means minimizing anything that makes him feel like a sick man and focusing on a return to the work and family activities that he enjoyed immediately before the stroke.
We appreciate your understanding. If you have any questions, please feel free to email me. I'm glad to explain what the neuro team explained to me; much of this is different from any other recovery, but the important thing is that he is improving and the dangers are past.
Thank you again for the many warm wishes and prayers.
MONDAY, SEPTEMBER 14, 7:30AM
Rehab continued all weekend and Charles was exhausted, which is good - it shows his work and progress. The exhaustion isn't just physical; we've noticed that too much to think about - even good things - wears him out and makes it difficult for him to focus, which distracts from his essential therapy. For instance, this weekend the girls were full of news about their classes, the soccer opening-day parade, G's success in her soccer game, their lovely choir performance, plans for their TV show, etc. Many phone calls and visits from friends and family, therapies, updates, and news contributed to his exhaustion and when we left after stopping by late last evening he whispered to me, tiredly, "so much going on..."
It is interesting to see his introversion manifest. For me this has been counter intuitive because I would have thought that lots of cheerful stimulation would give him energy. On the other hand, especially with challenges to his short term memory, it does make sense that so much stimulation would be overwhelming. This is consistent with what I have read about this type of stroke and with the limited stimulation (phone calls, television, visitors) that the therapists have directed. With reluctance, I am going to limit even our kids' visits right now and we hope that friends and family will understand and similarly respect Charles' need to heal, sticking to the time frame listed above for phone calls and limiting visits to one group/family in his daily visiting hour.
I got the chance this weekend to discuss Charles' condition and recovery with a neurologist whom we know through K's baseball team. (He trains the best brain surgeons in the world, so as impressive as his title is, it might as well have read, "the smartest man in the world." :-) This turned out to be really helpful, to get confirmation that Charles' physical progress is extraordinary, reassurance that the mental tiredness is normal, confirmation about the appropriateness of his various medications, suggestions about other meds to consider, and recommendations for other resources, some of which I've begun to pursue. I'm so grateful for the time that he gave me to share his expertise, wisdom, and resources.
Prayers please for continued strength, especially for the more intangible elements of healing.
FRIDAY, SEPTEMBER 11, 9PM
I watched him walk during therapy today. He was in a harness that hung from the ceiling and slid along a track that allowed him to walk a large circle around the floor of the facility. He had a crutch in one hand and was carefully taking steps with both legs, doing a good job focusing on the miniscule bodily commands that we usually take for granted yet which he needs to relearn. I was impressed! The therapist kept asking him about his fatigue level and he kept reassuring that he was fine; seeing his stamina coming back also felt good.
Charles got a visit today from his cousin Keith and Keith's awesome girls. We all really enjoyed getting to see them and appreciate the effort that they made to visit amidst a busy weekend of college campus visits.
THURSDAY, SEPTEMBER 10, 11PM
Charles had a busy week, full of therapy. His rehab doctor told me today that when they release him, it will be only reluctantly because they all enjoy him so much. Well, yeah! :-) He's making good progress, which is awesome, and is beginning to walk with a crutch and a ceiling contraption that supports him.
For local friends: What To Expect if Visiting: Somehow, the prospect of visiting someone in the hospital (even a rehab center) can be daunting. Charles told me today, "yeah, people might be scared to see a big guy curled up in bed." It WAS daunting at first, and a bit scary, to see him acting so unlike himself. But that was many weeks ago...
Now, visitors can expect a very "normal" Charles. He looks handsome and strong and has growing strength even in his weakened arm and leg. He'll likely be sitting up in bed or in his wheelchair. He has full long term memory and will be happy to share jokes and stories. Visits from kids are appropriate and welcome; he loves kids and while his propensity to potty humor is less filtered, will otherwise not behave in any way that would be off-putting.
There are some subtle changes, which may or may not manifest. He is more inclined to be happily emotional, though this is decreasing. If he does cry when he sees you, know that this is normal and that it is because he is happy. His short-term memory is still a challenge, so you may have a long conversation about the Giants game last night, only to have him ask you two minutes later if you know how the Giants are doing. This is also normal and part of his stroke recovery. As part of this, he also repeats himself sometimes, telling a story that he may have told within the last 20 minutes. Be patient - and it is okay to gently remind him that you just had that discussion, without belaboring the point. He also gets tired quickly, sometimes in obvious ways (i.e. abruptly announcing that he needs to go to bed) and sometimes in ways that manifest only the next day (difficulty focusing on his therapy because he is tired). For this reason, this therapy team is sticking to the one-hour a day, one visitor/family an evening rule.
That is also the reason for the evening-phone-calls-only rule. I was there today and saw his distraction when phone calls interrupted an important conversation with his doctor. He doesn't always remember that these calls should be confined to the evening, so he needs all of us to support his healing by remembering for him.
When we first arrived, my instinct was to surround him with people and many wonderful friends obliged, which was such a blessing. The restrictions on visitors and phone calls were instituted shortly after by the therapy team (not me) when they noticed the degree to which these visits were tiring him and thus potentially delaying his recovery. Interestingly, Charles was talking with another patient after dinner today and admitted that when he has lots of stimulation (people, calls, etc.), he feels so worn out that all he can think about is his desire to sleep. He looks and sounds strong, handsome, and normal though, so this need for rest is somewhat hidden.
The therapists don't even allow him to watch television except during the evening hours, not because they want him to be bored, but because his very real job right now is to heal. They have explained that to do so requires that his brain focus both on his therapy and on the mandatory rest times in between active therapy sessions. He really is too busy to be bored and he knows that he is surrounded by love through the many cards, letters, evening phone calls, and daily dose of evening visitors that he has received.
He (and we) are so very blessed; thank you for the ongoing friendship, prayers, and support.
SUNDAY, SEPTEMBER 6, 1PM
Aggressive therapy continues daily with Charles' new "work" day composed of two sessions of Occupational Therapy (OT), two sessions of Physical Therapy (PT), one session of Speech/Cognitive Therapy (ST) and (usually) some acupuncture, too. He is often tired by the end of the day, but the effort is paying off, as Charles is seeing daily improvements. The most noticible one to me isn't cognitive or ambulatory, but with his appetite; when his food comes he eats without prompting and eats everything in front of him. When the girls, Ernestine, and I walked in one night late this week, he barely paused from eating to greet us. This FEELS healthier, which in turn feels good.
He's enjoying his evening phone calls and visits from family and friends and now gets regular visits from Father Steve, who brings him both friendship and the Eucharist. Among others who came or called this weekend were Patrick and Cristina, friends who went through such a similar adventure and recovery nearly nine years ago. Hearing more about their process was practical and helpful; Charles got some encouragement and I got helpful tips on when and how to best advocate for Charles' needs.
THURSDAY, SEPTEMBER 3, 6PM
Charles seemed strong and content this morning, then tired and a bit repetitive/confused during the afternoon. Hoping that is a sign that he is working hard and improving. He walked a bit today with just one hand on a rail, which is serious progress.
The girls started classes today and I taught one of Charles' classes (science for seven and eight year olds), which went well but was also kind of sad. I started by explaining the anatomy of a stroke and answering their questions about him. Their concern and serious questions were awesome, though I found myself blinking back tears. Before and after, he called to ask how it had gone and kept insisting, "don't bore my students!" I did my best, but I know I don't have his charisma. Still it is hard to be bored by edible coral polyps (we are studying coral reefs), so I don't think I've lost anyone for the long run.
WEDNESDAY, SEPTEMBER 2, 6PM
He had a rough night - after cautioning us about the need for rest, the hospital staff woke him multiple times and he was grumpy when he got up in the morning. I made sure to talk with the therapist about that and she was immediately upset and apologetic. Better yet, she took immediate steps to make sure that won't happen again. Now we are working to fix other minor things related to his day-to-day living that I hope will give him a greater sense of dignity, comfort, and (ultimately) healing...
It is so hard not to be able to visit him more often and for longer periods; he is doing better with it than I am. Fortunately, the therapy instructions synch with our scheduling needs, as the girls' classes begin this week and I have needed to prep for mine, which begin this week with the kids and next week for my adult students. Life is easier at home than it was in Colorado because there are fewer new challenges (finding lodging, arranging transportation, getting food, finding something to do with the kids), but still full of busy needs related to homeschooling, working full time, and being there for Charles as long each day as his therapy recommendations allow. I'm grateful to be home and also praying for his full and quick recovery. Fall sports aren't going to be the same without him coaching and certainly the students in his science class will miss him (I can't begin to replicate his style, even if I am using great resources from the Ca Academy of Science.)
One interesting 'silver-lining' to this entire adventure has been the many conversations I've been privileged to share with people about prayer. I reflected on that today as I stood talking with one of our wonderful neighbors and he shared the many ways his family has been praying for Charles. It feels like such a precious gift - both the prayers themselves and the shared conversations - and a is a reminder that in spite of all of the difficulties, we are enormously blessed with love.
TUESDAY, SEPTEMBER 1, 11PM
A busy day. We visited twice, which is no small feat given the distance (about 1.5 hours each trip) and the traffic. He had a productive day, but seemed to be confused and fearful in the evening, perhaps due to fatigue. He was certain that our morning visit had been the previous day and cried in fear and confusion when he realized that his perception was so far off reality. I ached for him, but he seemed better by the end of our visit. I'm praying that he rests well so that he continues to make good progress. His nurse projected that he may be walking (with a walker) by the end of the week!
MONDAY, AUGUST 31, 11PM
I sat with Charles through most of his numerous therapies today, getting to know the therapists and seeing Charles' reactions to them. I am very impressed and pleased: he had OT, ST, PT, then PT and OT together, then acupuncture, then a group therapy session. One of the therapists said, "most people think of hospitals as lonely places, but this isn't a lonely place at all!"
Over the weekend, Charles had lots of evening visitors, which he (and I!) appreciated, especially since we were en route back to him. However, the therapists want him to increase his ability to focus, focus, focus, which means that they are scaling back his visiting hours. I learned today that his physical capacity isn't in question, but his ability to focus is what has been most affected by the stroke, so his inability to walk, his likelihood of falling as he re-learns, isn't a matter of teaching his muscles what to do as much as teaching them to remember to focus on the task at hand. If he is starting to take a step and gets distracted, for example, by a thought about a movie he saw earlier, he may forget to engage the relevant muscles and fall, not through muscle weakness, but through his brain's inability to stay focused.
To that end, the hospital has limited his visiting hours to one hour a day (6-7PM) and has asked that only single visitors come at a time. He's also limited from other distractions - i.e. he shouldn't be getting phone calls except between 5-9PM and isn't supposed to watch any television at all during the day. His entire focus is on therapy, rest, then more therapy, then more rest (which is really part of his therapy). If you want to come visit him, shoot me and email and I'll coordinate his 'social schedule'
:-) (madtortuga@aol.com).
He seems happy and relaxed and his therapy went really well today. He used parallel bars to walk and did so with limited support from his therapist. The 10-20 steps that were a major accomplishment even late last week came seemingly easily already today.
Among our wonderful visitors this evening was our good friend Father Steve, who celebrated our wedding with us. Tonight we visited and prayed and he shared the Eucharist with Charles, which brought Charles to tears for the first time today. A sweet evening with good friends; thanks to all who have visited him and welcomed him (almost) home.
MONDAY, AUGUST 31, 11AM
All back in CA. Whew! Left CO at noon on Saturday and arrived Sunday evening; my parents and Charles' mom left at the same time and arrive today. We love Colorado and so appreciated the hospitality that so many showed us there. Special thanks to Mike and Terry for hosting us during the last two weeks and to my parents and Charles' mom for doing so much and helping to entertain the girls. They have all been with us since the day after Charles had his stroke and we appreciate the sustained moral and practical support.
Photos soon to follow from "America's loneliest road." Seriously; it is remote and wild. America is very, very huge (and we only drove across part of it).
Most importantly, we are grateful now that in this new facility Charles seems happy and is already getting stronger. Fingers crossed for continued rapid recovery now that he is truly focused on rehab.
SATURDAY, AUGUST 29 11:30AM
Charles has called several times and sounds upbeat and pain free. He expects (and has begun) a busy day of assessments and has been told that his days from here out will be very busy and very exhausting (and hopefully very productive, too - we want him coaching basketball again by late November :-)
FRIDAY, AUGUST 28, 11:45PM
An unbelievable day. Unbelievably long....
It started at 2AM when I woke, then again at 3:15. I felt like I was having a panic attack - couldn't breath, stomach cramping. I tried to rationalize and pinpoint the stress, but no one thing seemed to be worrying me; must have been the cumulative stress of everything planned for the day, plus the shock of getting out of the hospital-to-house stupor. I finally jogged a little and that helped, then dressed, said goodbye to the girls, and began the 70-minute drive to the hospital.
There I woke Charles up and got him ready, then took down the "wall of love," carefully packing it with other possible needs for the day. Charles was tearful about saying goodbye to the marvelous staff and informed me that one of the nurses had even called him from home the night before to say goodbye. Quong is really special even in a crowd of RNs and Techs who exceed expectations so consistently.
We waited for SuperShuttle and then hit our first snag - the van arrived, but it wasn't wheelchair accessible, as requested. I took one look at it and decided that it would simply have to work and we successfully maneuvered Charles into a seat. Getting out and back into the wheelchair at the airport was another feat made more complicated by the fact that the driver just would not drive to curbside and instead had us get out in the street. Nevertheless, we made it.
Checking in and security provided no special service, but we made it through. Getting on board was another challenge, as the "aisle seat" ordered didn't come until the plane was almost full and we'd been sitting at the end of the ramp for ages. When it came, again the seat transfer defied our practice sessions, as the aisle arm rest didn't raise and so Charles couldn't slide in as planned. Still, he is a graceful improviser and it worked out.
As soon as we took off, Charles got really cold. He's lost a lot of weight and the air seemed to be blowing right on him. We had a moment when I couldn't do much except wrap my vest around his head because the seatbelt sign was still on, but then the flight attendants provided "blankets" (the thickness of toilet paper) and he eventually warmed up a bit. That moment was hard though, as he got tearful. He has expressed a lot of fear about flying based on mean flight attendants he encountered many years ago after another surgery.
He sat next to a lovely, patient, nurturing man from Montana who engaged him in conversation and kept Charles' blankets on, too. (Charles and I were both in aisle seats, so I was on Charles' other side).
Getting off - another challenge, as the configuration of the seats required not a slide, but a stand and then about four steps backward. He did it though and we were off to the SF SuperShuttle. Unfortunately, that SuperShuttle only does pickups from a poorly signed "courtyard." But we found it and at least it was wheelchair accessible! I've been surprised by how difficult it is to navigate in SF in a wheelchair, since I know the advocacy has been vociferous and loud for many years, yet seems (in our limited experience) to have not be fully effective. SFO's resources don't even include a link to accessible taxi options!
The check-in at the rehab was without incident and Charles remained strong and seemed comfortable with my leaving. It may have been harder fro me to leave him! I reconstructed his "wall of love" before I left, made up of the cards and pictures he's received from so many. I think he likes the kids' drawings best and many of the great kids whom he teaches and coaches have sent great additions to the wall.
Got a ride (thanks, EB!) back to SFO, where my flight was overbooked AND delayed. A last minute miracle gave me the last seat to Denver, thank goodness. I had been standing in the airplanes's entrance foyer, eyes closed and thinking about my friend Marion and her team of friends whom I knew were praying for me all during the day, trying to channel their prayers into this very specific need that one person would take United up on their offer to give up a seat to cover their overbooking issue. When a man who had boarded long before suddenly stood up, I felt great appreciation for him and for the wonderful protective prayers of Marion and crew.
I arrived to Denver late (and temporarily confused about where I was) SuperShuttled the 45 minutes back to the hospital, and then drove the 75 minutes back to the girls, arriving just before midnight. Whew! Talked with Charles most of the way back from Denver to Colorado Springs (not illegal in CO) and he seemed upbeat still. Also got messages from friends who stopped in right away to see him, reporting on his status and frame of mind and all is good.
Now back in CO, where we will get the car checked, pack up, say grateful goodbyes, and begin the long drive back. Here was my welcoming crew when I finished this long day (they were a welcome - if sleepy - sight).
FRIDAY, AUGUST 28, 3pm
Charles is safely settled into rehab and seems happy with the care. They promise to work him hard... visitors only from 4:30-9:00pm. The journey had unexpected hurdles, but he managed like a trooper and didn't even seem tired when we arrived.
Now trying to get back to CO to get everyone else home....
THURSDAY, AUGUST 27, 7PM
Progress! Thank God, everyone who has been praying, the nurses, physical therapists, and case workers. As of tomorrow - God willing - Charles will fly to SF and check into an acute rehab facility. His focus must be on therapy and rest, but he can have visitors in the evenings (either after 4:30 or after 5:00; I'll check tomorrow to confirm).
If you have time to drop by some evening, I'm sure that he will be very grateful and thrilled to see you. For online privacy purposes, I'm not going to put the facility's name or address online, but if you might drop by, shoot me an email and I can send you the info: madtortuga@aol.com. If you aren't in town but want to send a card, also send me an email and I can send you our home address.
Tomorrow we will be praying for safe travels and continued strength and healing. We also have lots of ongoing prayers of gratitude for the successful end to this stage of his journey and for the sustained healing he's experienced thus far.
THURSDAY, AUGUST 27, 11AM
We thought we had the insurance approval for acute care, then found out it was a false alarm. Still, paperwork is in order for discharge and my backpack is full of drugs for the trip. Prayers engaged for this final step!
PT went well today. He walked about 20 (small) steps down the hallway, with a lot of coaching and support with each step, then repeated it three times. Both his stamina and his walking skills are increasing, which is great. His mood is upbeat, too, thank goodness, as the alternative is draining. Still no appetite, especially for any meat products, but he eats when I prompt him incessantly. (The girls may get what they've always wanted - a Dad who is a vegetarian like them!)
Holding our breaths and praying hard...
WEDNESDAY, AUGUST 26, 6PM
Plans to return home derailed; perhaps I was being too optimistic anyway. And as a result of waiting ages for answers, we left the hospital late and ended up in terrible traffic that meant a two-plus hour trip back. Exhausted.
Prayers, please, that Charles' insurance responds early tomorrow with approvals for him to go into acute rehab. (Delays and other options carry challenging consequences.)
WEDNESDAY, AUGUST 26, NOON
Great PT session, two days in a row. He does his seat transfers easily. He stands (with two people spotting) and walks (with difficulty and three people spotting him) ten feet at a time. Today he managed to move his bad leg voluntarily. Don't get me wrong - the whole therapy process is pure agony for him - but he perservered and made an awful lot of progress, so it was good.
He's still very emotional and really wants to go home. Soon, we think. Plans being finalized...
MONDAY, AUGUST 24, 5:30PM
A productive therapy day. Charles did multiple seat transfers, half without a sliding board, just a single pull straight across from one seat to another. He also stood several times and for a total of almost ten minutes. Very difficult, but he kept saying, "I'm going to walk to the end of the hall and back" and I think that vision kept him moving, if not quite walking. Yet.
We encountered and surmounted one more administrative hurdle; a major victory. Alleluia.
The girls were really upset when they woke up this morning and I was already gone. I got a phone call from K in tears, then another one later in the day when she couldn't find something. She's not one to cry much, so it made me sad again to see how the accumulated stress is getting to her. G texted me her disappointment that I wasn't there at about the same time, but she accidentally included a typo. "Wake us tomatoes" said the first text, then "I mean tomorrow." Of course I responded, "OK, broccoli." (Oh, I find myself so amusing - someone has to!)
Poor kids. They are both having some "sympathy pains," unexplained pains in exactly the same location as Charles' biggest aches and pains. Fortunately, theirs seem to be resolving. I feel for them and at the same time think that these subconscious reactions are pretty sweet. G broke into tears in Safeway, saying, "I miss my Dad...."
Our EM today knelt before giving us the Eucharist and, perhaps because of the solemnity of her reminder, I felt with it such a Presence of unexpected peace and reassurance. Marvelous experience, especially on a day when I was operating on only a few hours of troubled sleep. Charles was smiling angelically afterward and commented on the appropriateness of her prayer and it was great to share such a spiritual experience.
SUNDAY, AUGUST 23, 10PM
A hard day in ways that are hard to explain. We encountered possible glitches to our travel plans - more to be determined as next week begins. To clarify, he is not coming home, but (hopefully) to a rehab facility in San Francisco. I've been talking with the therapists there and a good friend who experienced the facility and will have more information soon about possible visits and phone calls but it looks like they will be limited to the lunch hour and dinner time/evening hours. If admitted, his therapy and rest schedule will occupy the majority of his "working day" and his healing will depend on avoiding the distractions that so easily derail his attention from this essential therapy.
Today was also a "valley" in terms of physical progress - he did some chair transfers as the therapist assigned, but was exhausted after just a few and not showing the stamina gains he'd shown before. But the day was hard in ways that went beyond that... the girls and I discussed the fact that we are increasingly lonely for the man that we know and love so much. He has always been intentional about making choices that allow him to be physically present for his kids on a daily basis and we miss that, we miss him. Right now, his highs seem too high, his lows too low. He groans in loud agony when he bumps his foot, making me ache for the pain he seems to feel, then has the same reaction when I rub some cool lotion on a sore knee, leaving me confused about when he is actually feeling serious pain. I don't know what to call this - it isn't memory or cognitive understanding - but it feels like part of the real Charles is still missing, but it is a subtle part and you'd have to know him well to miss it. The girls of course sense it too and we are all aching, sad and lonely for him, which is confusing because of course he is right here. The nurses, who didn't know him before, are perplexed too, never knowing when he is telling a true story and when he is on a high, making something up to entertain them. We have no name for this disconnect between the husband/father we know and the subtly-off reactions of the slowly healing husband/father before us, so it is lonely and confusing....
SATURDAY, AUGUST 22, 8AM
Nearly everything is in place for a transfer to SF next week. Fingers crossed! Acute therapy will be intense and I'm trying to prep him for that mentally and physically.
He's feeling stir crazy and very grumpy; understandable. But he is also still tearfully grateful at the cards and e-greetings that continue to arrive. Here's a partial picture of Charles in a wheelchair beneath a wall in his room:
The girls are having a rough time, too. G was eloquent yesterday, declaring that "there is no such word as happy" and resolving to "form a club, break into people's houses, and rip out the pages in dictionaries that have that word in it, because it is meaningless." I ache for her and yet am so impressed with her eloquence and ability to express her feelings. K wrote out codes that translated as, "I hate [the hospital where Charles is receiving care.]"
On the other hand, there is this, which reminds me that even the anger and frustration is fueled by love, love, love:
FRIDAY, AUGUST 21, 10AM
Difficult PT this morning, but productive. He stood three times and is now focused on learning to balance while standing. Difficult emotionally too; he's feeling very tired, both physically and, likely, mentally/emotionally. Still waiting for the final approvals to be in place to travel... we are picking up a wheelchair this afternoon (hopefully) in anticipation of needed airport transfers.
THURSDAY, AUGUST 20, 5PM
A good PT day: Charles stood and walked eight steps, with support and coaching. Improvement!
We also began resolving some of the conflicting messages we were getting from his care providers. He makes great improvement with the physical therapist, then the nursing staff, unaware of his progress, continue to do for him many of the things for him that he has re-learned to do for himself. I feel awkward telling them what to do - and of course they don't take direction from me - but I feel like without better communication his therapy gains are short lived, so I assert myself as often (and delicately) as possible.
This even happened with his doctor, who came in to see him and then reported back to the physical therapist that he was in no shape to travel because he couldn't even sit up in bed. What?! He's been sitting independently (no back support) for weeks. The physical therapist called her on this assumption, saying, "you are looking at a man who is 6'7"! He's not straight in bed because the bed isn't big enough for him!" I'm glad the misimpressions are being corrected, but a bit concerned that without diligent correction, these could be guiding decision making.
Also, I insisted today on talking with the case manager, whom I had only met once. Her impression of Charles' readiness was different from mine, which was so frustrating as her very definitive understanding was at odds with the work we'd been doing so far. Fortunately, in conversation I was able to refer her to his physical therapist, who affirmed that Charles is now, officially, plane-ready. That helped enormously: the case manager went from seeing problems to finding solutions, contacting SF-based facilities and finding a spot for him at one of the best. I then spoke for a long time to one of the SF case managers, who was very encouraging after reading Charles' file. So, as soon as we can get the last bits of paperwork in place, I can buy a wheelchair and a plane ticket and we can hop the Rockies.
Our spiritual moment came with the daily EM, who today was a lovely and funny talkative woman from Texas. She walked right in and cheerfully said, "Jesus is here!" This time I cried as we received, feeling relief from my some of my frustration and weariness in that Presence and the strength and love that comes with it.
Please pray that the final approvals will occur tomorrow!
THURSDAY, AUGUST 20, 7AM
Charles had a slow day yesterday; the hospital seems to be merely babysitting him while we wait for rehab possibilities. We're not supposed to help him - this is the job of the hospital staff, as they repeatedly tell me; I assume that there is some liability associated with this direction. However, when Charles needs something other patients have priority needs and he often has to wait a long time to get help changing his bed, getting meds, getting support to move, etc. I'm not blaming this wonderful staff; I believe that other patients do have priority needs, but still it is extremely frustrating to be stuck here in a situation when I am not supposed to do what needs to be done and when his lower priority status means that he doesn't always get the daily physical therapy he needs for his recovery.
Apparently Charles feels it, too... he got out of bed by himself after we left yesterday and fell, subsequently complaining of pain in his bad ankle due to the injury. (X-rays showed no broken bones.) The hospital setting is very caring and clearly he has expertise available to him, but at the same time the communication is incomplete, it is hard to tell in the big picture who is ultimately in charge, and the lack of control is frustratingly dehumanizing. Even for me, and I'm healthy, not the one who has been lying half dressed in a bed for nearly a month now.
Really bad evening for me last night. I'm feeling completely overwhelmed and there is not a thing anyone can do about it. Two things I'm tired of hearing, because they are both true and meaningless and are repeated a lot:
1) "Take care of yourself." What does that even mean? I often can barely breathe, can't eat, can't sleep. Charles freaks out when I leave the hospital, the girls are angry and sad when I leave them, but so angry at him and in all fairness needing a break from the hospital. There are continuously pending issues of lodging, transportation, food, bills, and life that I have to deal with and despite appreciated help from friends and family members who have given up much to be with us, the responsibility still ultimately falls to me. There's no room whatsoever for me in this situation and there's nothing to be done about it. This is life right now, I am strong, I will cope, but there is no "taking care of" me. The suggestion carries more pressure and the very concept is beyond the point.
2) "This is going to be a long journey." I know. I accept that. But to be reminded of it frequently is overwhelming, especially when I feel like I can barely make it through the day.
Things will get better. Hopefully we will get some answers soon. The process just needs to work itself through and I need to pray for patience and strength.
WEDNESDAY, AUGUST 19, 7:30AM
Hard to leave the girls this morning; both woke up and were sad. "Can't you just not go to the hospital for one day?" Oh, how I wish... soon, I hope. Charles slept well and we are looking forward to a productive therapy day. Prayers also for a firm and imminent transportation plan....
TUESDAY, AUGUST 18, 9PM
Charles stood today, getting himself up by using a stable bar. He had three of us spotting him, just in case, and leaned slightly on me once he was up, but he did it. He was also out of bed for six hours straight, without complaint or difficulty, and did his bed-to-wheelchair transfers with relative ease. I think that we are ready... now for the logistics to fall into place.
We moved out of the lovely Denver home where we'd been staying (with deep gratitude to Shera and Kris... and Andrea and Bill.) Much longer drive now and a shifted visit schedule; fingers crossed that despite it being more work (driving time), it will work for Charles and be better for the girls.
MONDAY, AUGUST 17, 9AM
Overhead (from the PT) that the doctors are "flabbergasted" by Charles' progress. A massive bleed like his shouldn't result in such improvements, so quickly, apparently. I told him that love and prayers are the reason; we are so grateful.
His goal was to sit up for five hours today and he made it - with difficulty - for five hours and 20 minutes. We counted every one of those final minutes....
SUNDAY, AUGUST 16, 8PM
No therapy on Sundays. Instead, Charles got out of bed in about 90 seconds and then into the wheelchair in one quick swoop. Plane ready? Fingers crossed... He sat up in the courtyard and then the cafeteria, completely himself, for a full three hours. Afterward, he was tired and disoriented, alternately joking with and speaking in discipline-Dad-voice to the girls.
Prayers for a plan this week for an imminent return home! And strength....
SATURDAY, AUGUST 15, 6:30PM
A great PT session, but hard. Charles began with a determination that revealed his athleticism. The therapist set ambitious goals, all focused on the skills needed to travel effectively on the airplane. The hardest part was transferring toward his weak side and while he managed to do it, it was so difficult we were both in tears by the time he finished the first one. He was in pain and I ached with sympathy. The girls, in the meantime, had fallen asleep in the room... late nights at the hospital mean late bed times followed by early mornings in order to get here in time for therapy. The combination is tiring.
Charles' foul moods continue and manifest snappishly. It is hard on me, so I know it is harder on the girls - it seems like he is his normal, happy-Dad self, then suddenly he says something harsh. It is the stroke talking, but it still stings. The girls and I have a new plan for taking care of each other through such grumpiness: 'ice cream' is the code word for a plan for a special treat of some sort following our visit. It seems to help, but I know it is still hard on them. (And on him, of course. Nothing about this is straightforward or easy.)
We had a quick trip to Manitou today and got to congratulate my Mom on her 28th completion of the Pikes Peak ascent. She got an award in her age group and was off first place by only six minutes. Pretty awesome for an 8,000+ foot climb over 13 miles. Charles says we are all training with her next year, which sounds like a great plan to me... now we have to convince Ernestine. :-)
FRIDAY, AUGUST 14, 5PM
First time outside in over three weeks. The plans for the day got derailed by his bad night; he was asleep when we arrived, which meant that everything else scheduled for the day got pushed back. The girls wanted to be there for therapy once they learned that he got a "grounds pass" to go outside. In actuality, we effectively missed therapy, except for getting him up and into the wheelchair. Like everything else this day, that didn't go as well as we'd hoped, taking longer than it had the previous day, but at least he got to go outside. The girls didn't leave the hospital until late afternoon, but are riding their ripsticks now, awing Denver with their skills. PT now is going to focus entirely on skills dedicated to helping Charles travel back to SF. Therapy in Colorado is a possibility, but we would have to return home and leave him while we settle into classes, which none of us wants. Our wonderful therapist gets it and she's doing her best to get him ready to fly, soon.
FRIDAY, AUGUST 14, 8:30AM
Last night was hard; Charles was irritated with the girls, who were actually trying really hard to be good. K was just sitting, but merely rustling in her seat irritated him and he snapped at me, "how would you like it if you were sick and everyone were making so much noise." The kids are still kids and felt unfairly yelled at by Dad. I tried to explain that his brain is healing and the irritation is part of it, but K was so upset that she had a hard time sleeping, which meant of course that I was up with her too.
Puck wanted attention in the wee hours of the morning (thankfully communicating his need to go out), so my night was short. Charles apparently had his own rough night, despite medication. When we arrived he was more sound asleep than I've seen him in the time we've been here and Ernestine and I settled quietly in next to him to wait for him to wake. He knew the specifics of where he was when he woke, which is good, and with some prompting the year, too. And during neuro rounds, he got a "grounds pass" to wheel himself outside during therapy. He's been inside for over three weeks now and gave a happy "thumbs up" when he heard, excited about getting some "Rocky Mountain air."
Praying today for improved mobility and decreased agitation and aiming for some fun for the girls, too....
THURSDAY, AUGUST 13, 10AM
Charles stood (with a lift) for 15 minutes today, a significant improvement from two minutes (max) yesterday (and yesterday he only stood that long because after getting him up, it took a bit for the physical therapist to get a nurse in to help get him back down). Today he again got to the edge of the bed and then into a wheelchair by himself. His motivation is "on" and his focus seems significantly better. He is completely worn out after an hour of therapy, but is sitting up in the wheelchair for another two hours to "train" for the trip back home and wheeled himself around the floor quite a bit. Seeing his exhaustion, I understand why we can't quite get him home yet... but seeing his progress I am optimistic that it will be very soon.
Plans slowly coming together for that. He needs a bit more independent mobility, but is making strong progress. Soon! Please continue to pray for additional strength and mobility...
WEDNESDAY, AUGUST 12, 8:45AM
Good therapy session again. He got out of bed independently and in one strong movement (after a lot of encouragement and reminders to focus) and then, with the help of a lift, stood for several minutes, which took effort from both legs. It felt so amazing to see him standing up! His kick was stronger yet today in his bad leg... so fantastic to see improvement. And he joked with the neuro physicians on rounds while simultaneously complimenting them, the staff, the hospital....
The best part of the therapy was that today, for the first time, he initiated a lot of the exercises, said that he wanted more (despite being tired), and suggested trying new things with the therapist, i.e. "how about if you hold my sock and I try to hold my leg up as long as possible." Two or three times she had to tell him that that was enough, that she didn't want him to get worn out, and that's a big change, since up until now she (and the girls and I) have been hounding him to do more while he pleads exhaustion or tries to joke his way out of the work. I love this new self-determination.
The many people who are praying are working really hard for Charles; we so appreciate those prayers and know how much work and intentionality it takes to really pray and pray well. This continues to be a challenging journey in many ways and we are acutely aware that these prayers are sustaining us. Our prayer now is for mobility and a transportation plan that can be effected very soon. This directly relates to our morning therapy, so we especially appreciate our 7AM PST prayer warriors!
Thank you!
TUESDAY, AUGUST 11, 9:30PM
A day as awesome as the previous day was exhausting. Of course, awesome is exhausting too...
When we arrived at his room, the EM was there and we immediately joined hands around his bed to pray the Our Father. Charles received the Eucharist and then got upset that we didn't too (I think that EMs typically carry enough for the patients, not their families). His concern was touching, as was the time together in prayer.
Then, in therapy, Charles GOT HIMSELF OUT OF BED. Yes, no help, to the edge of the bed. It was slow and he still has focus issues, but he did it. Then the therapist helped him to get into a wheelchair and he finished his therapy from the chair, worn out, but a champion. His left (bad) leg moved significantly the day before, but now not only kicked, but moved in an arc about four inches off of the ground - wahoo! OT and Speech Therapy also work with him daily, the latter for cognitive healing (his actual speech is fine), which is improving every day, too.
We had a really wonderful trip to Manitou and a fabulous party with kind family who donated their time, care, children, and a mountain of gifts. Cake and pizza, too. A birthday away from home and in these circumstances is hard, but they moved mountains to make it special and wonderful. The eight dogs helped, too... a river of happy moving bodies.
While we were gone, Charles apparently decided that he was fully capable of taking a walk and attempted to get out of bed by himself again. Fortunately, from an injury perspective, he has an alarm on the bed and was "arrested" quickly and returned safely. I'm glad he wasn't hurt, but I love his determination - I think it bodes well for future healing.
We picked up Charles' mail and some for us too and when we returned to the hospital created a wall of happiness for Charles out of the cards, pictures, letters, notes, and Mass intentions. How incredibly wonderful! Charles' friend Pete was in town for business and visited again, which made Charles' day.
Good news on the projected schedule for returning home, too. He needs more capabilities before he can travel, but is making good progress in that direction, so we are able to begin talking about choosing a rehab facility near home. At neuro rounds, the doctors all said that his improvement has been far beyond what they ever projected and I was told definitively, "he will walk again."
Excellent day, all around, thanks to your prayers and support. Eternal gratitude!
MONDAY, AUGUST 10, 10PM
REALLY hard day, ups and downs.
UP: His physical therapy went really well and the therapist got all of us involved. I got to sit next to Charles to remind him to sit up straight by remaining shoulder-to-shoulder with me. G passed him cones, which he then had to pass to me, retaining his balance while sitting up. K's job at first was to whack him with a ball when he lost focus (!), then she rolled the ball to him to kick with his bad leg... and he moved it! (In the meantime, Ernestine took over the whacking :-) That was the biggest news - significant movement of his leg, moving forward about four inches at a time.
DOWN: Charles was pretty agitated and confused this day. He called early, when we were just rushing out to the hospital, convinced that he'd been driving around all night and relieved that he hadn't hit anyone. He kept saying, "I just left the car somewhere and jumped into a bed. How are you going to find the car?" He was shocked at the idea that this was a dream of some sort; I think he was confused by the different venue after all of these weeks.
Also, Charles needs are increasingly at odds with the girls' needs and I'm in the middle. I was near tears all day and in them part of the day. If I left the room to return a call, they raced after me saying that he was yelling for me. But then, when we did leave, the girls hollered a great deal because they are so worn out with going to the hospital. Horrible things were said (not by me, thank goodness) and then apologized for. Without being unnecessarily dramatic, I felt overwhelmed with anxiety. Fortunately, we just kept moving, getting through the day. When the girls finally fell asleep, I sat on the floor next to them, completely drained.
Charles is also feeling down, increasingly aware of his limitations. I think that that shows his improvement and hopefully his frustration will translate into hard work on improvement, but I feel for him. It is both mental and physical - he's more aware when he doesn't make sense, more aware of the aches in his body from not moving much for nearly three weeks. It's hard and hard to know when to reassure and when to push. I have had enough of the morbid last words, though. When he started that again this day, tearfully grabbing K and beginning the words of wisdom that signal his last goodbyes, I practically jumped on him, telling him that we'd had enough of that, that he was going to live for a long time, and that he needed to remember that he is their Dad, that they need him to act reassuringly, not dramatically. It is hard to know whether to reassure him or to try to snap him out of his moods, but the girls needed to hear that, even if he did object, complaining, "stop yelling at me!" Sigh...
SUNDAY, AUGUST 9, 8PM
Finally out of Critical Care! We hummed the graduation song as we followed his bed to the neuro ward. We had hoped to make this move a full week ago, so it was with quite a bit of relief that we finally settled into this next step after days and days on a waiting list.
SATURDAY, AUGUST 8, 7:45PM.
Great day. He seems himself and is relaxed and happy, looking forward to going home. All is good...
Our thanks to those who have asked, but we have no material needs at this time. Your prayers have brought us far and we are grateful.
SATURDAY, AUGUST 8, 10AM
He called at 2AM, missing us. I tried to calm him down with soothing expressions of love from my end while the nurses gave him some sleeping meds at their end.
We went over early in the morning to find him well, but emotional again. I had arranged for him to receive the Eucharist and when the EM came in, he began crying again as he received, as did I. It was very moving to receive together as a family and to pray together too.
Still in Critical Care, but scheduled to be moved out as soon as there is room on another floor, perhaps later this afternoon.
FRIDAY, AUGUST 7, 8PM
A much better day. The drain came out! We were there for it and watched the stitches coming out, then five inches of drain come out of his head, then two more stitches to seal him up again. He is scheduled to be moved out of Critical Care this evening and with that move comes much expert opinion that rapid improvement should follow as he gets more therapy and more sleep.
His mood was improved too and less dramatically erratic, though still somewhat so as he went from being emotional to shouting. Unlike yesterday, he did quickly apologize for the latter. I finally got to meet the neurosurgeon I had talked with en route to Denver and he was very helpful, answering Charles' questions about long-term care (no need for a neuro surgeon any more) and mine about his mood swings (totally to be expected). I was also concerned that his "peaks" and "valleys" don't seem to be linear, but more circular, as his cognitive awareness seems to take two steps forward and then one step back He said that that is also normal, that it is important to look at the bigger picture. I had guessed this, but it was good to hear.
He seemed optimistic that our anticipated return home might not be too far off. Hurrah! I'd almost always rather be on the road, but not this time... We are all eager to make progress toward having the four of us together under one roof again, learning to support each other as we adjust to our new normal. Fingers crossed that we can begin that soon.
Thank you for the prayers (and thanks, Danyell, for the visit!)
THURSDAY, AUGUST 6, 9PM
Several good friends have shared stories of loved ones and their journeys to recovery after a stroke at a similar age to Charles. These have been so helpful, giving specifics and thus understanding to the medical professionals' more generalized, "this is normal" reassurances. Our friend Karen told me that "she never knew what Mom she was going to get" when her mother was in her recovery process. Today we saw what she meant.
During the morning visit and continuing to Danyell and Ernestine's afternoon visit, Charles was mean. Mean! Beyond grumpy: he used a sharp tone that several times almost made me cry. He was directive. He asked questions about past irritations and followed up with hopes that I had responded to individuals about those issues equally sharply. This was such a sudden and sharp contrast to his lovey-dovey-ness of the night before (and, indeed, the last two weeks) that it was pretty startling.
By our early evening visit, he wasn't mean anymore, but was back to being agitated and talkative, making sense only partially. His language is normal and clear, but he refers to conversations that didn't take place and expectations about activities that can't possibly be planned. He was no longer mean (thank goodness, the girls were there), but he was loud in his complaints about physical discomfort and particularly and repetitively vocal about bodily functions that usually aren't discussed in polite company.
Then he took a nap and when he woke up just ten minutes later we had Charles #3: mellow, smiling, relaxed, all but singing "kumbaya." This is good... his BP was up again and he needed to relax, but the suddenness of each of these transitions was discombobulating, to say the least. It is as if the normal range of emotions that we each usually feel that are filtered by our understanding of what is acceptable behavior when interacting with others are intensified into one emotion at a time, without the filter.
The brain drain is still in. They had told me it would come out by afternoon, but made a decision sometime during the afternoon to do it tomorrow, which I found out about when I inquired why it was still in. I really wish that someone would take responsibility for keeping me informed. This need isn't just for my peace of mind, but relates to the need for some consistency with his care, as the nurse's idea of his "baseline" tends to be informed only by his or her experience of Charles for the last two-three days. But my complaints are probably driven by my weariness and don't undermine our gratitude for the overall quality of marvelous care.
Thank you for the prayers. This new stage means that he is progressing... and it looks like we'll all need the strength of continued prayer to get through it.
THURSDAY, AUGUST 6, 8:45AM
I got to the hospital as soon as visiting hours began and he wasn't in his room, which scared me, but he was just off getting a cat scan. Waiting now for results. He seems uncomfortable, which is nothing new, and irritated, which is understandable; he also knows where he is, which is new (if less exotic than our South American destinations).
Last night was awful. His BP spiked higher than it ever has and medication wasn't helping. He seemed to know that something was wrong and said goodbye to each of us. It was agonizing, even knowing that the medical staff wasn't as convinced of his imminent demise, to wonder if he knew something they didn't and to look into his eyes, knowing that he was certain (though wrong) that this was the last time.
He told the girls to take care of me and one another. He told them not to "take crap" from anyone. He told me that I was the best thing that ever happened to me and that I "was the best wife ever." When I corrected him, telling him that I AM the best wife ever, he showed a spark of his less dramatic self, saying "are you correcting my tenses now?" (In this context, definitely, yes!) He asked his mom if she was ready to lose him.
I've never felt so drained. No adrenaline left, just sheer heaviness. I couldn't sleep afterward, just lay awake with the girls. When I did finally sleep, I dreamed of other people dying and then of Aunt Lindy's presence.
This morning he seems fine. Neuro doctor just came in and said that they are likely to remove the drain today, which is a huge step in the right direction. Progress, thanks be to God, with hope for more to come.
(Happy Anniversary to Mom and Dad (49) and Mike and Terry (35!)
WEDNESDAY, AUGUST 5, NOON
They finally decided to clamp his drain today and will give it 24 hours to see what happens; our hope (and prayer) is that they can remove the drain, which will create more options for mobility and rehab.
Praying for that today!
Otherwise, he is doing well, slowly improving with cognitive understanding, endurance, and mobility. Teensy wiggles of his left toes, almost imperceptible, but any movement at all gives the therapists something to work with.
The neuro RN asked Charles about his cognitive understanding and he reported that he is completely normal. That said, when I asked, he still reported that we were in Venezuela. He is resisting Denver, for some reason, even specifically saying, "I know I'm not in Denver anymore."
Still, progress and the hope of more. He's got aches and pains, mostly from being in bed too long, I think. His appetite is low, but again I think that's because he's drinking high calorie protein drinks and isn't moving enough to burn any calories. His cardiogram showed no heart problems and his sonogram showed that the clot in his calf is stable.
Prayers that by tomorrow we won't need that drain anymore!
TUESDAY, AUGUST 4, 12:30
OT came in and got him to sit up again and he did so with much less effort, including sitting on his own. He even stood - with assistance - for a few moments.
His confusion comes and goes. Today we began in Santiago, Chile and now we are back in Venezuela. Maybe his Spanish will come back...
TUESDAY, AUGUST 4, 10:30AM
No PT today; he complained of chest pains, so they suspended therapy, did an EKG, and are waiting for results. At rounds, they said that they neurologists decided that since his brain is still draining, they will wait a few more days before removing the drain. He had another CAT scan also this morning.
I'm impatient, but a nurse practitioner assured me that getting home by the end of the month is still realistic. I'm hanging on to that.
Praying for all of these things....
MONDAY, AUGUST 3, 8PM
I left the hospital feeling especially tired and frustrated. They haven't taken out his drain and I don't know why. When I asked, the particular nurse on duty wasn't sure and none of the neuro team was around to answer any questions. She did say - news to me - that they are considering surgery now. That seems intimidating, but I am most disappointed to be veering from our target of getting him out of critical care soon. We are at least two days away from that at any given point that they haven't taken the drain out, which postpones my hope that we would have a rehab plan in place by the end of the week. I'm tired of being in a holding pattern, with therapy (excellent though it is) just once a day. I am impatient for results (however I've been warned to expect both peaks and valleys).
I think that Charles is feeling some of that, too. He stared without questions as she explained the possibilities and I imagine it must have felt overwhelming to him. He was tearfully emotional (which the girls assert that he will vociferously deny when he recovers) when my brother and his sister separately arrived for much appreciated visits. And he asks more frequently to get up and go home.
Hoping and praying for more progress tomorrow...
MONDAY, AUGUST 3, 1PM
Charles did a good job sitting up yesterday and today on the edge of the bed. Took a lot of work to stay balanced, but he improved a lot today even just from yesterday and today he did it for longer and with a lot of silliness. Nice to see his sense of humor, except that it distracts him from what he needs to do. I warned him again that if he doesn't focus, I'll bring G with me - she would be very good at telling him what to do in a voice/tone he wouldn't want to mess with. :-)
Today the Physical Therapist went one further and got him lifted into a chair, so that when the medical staff came around for rounds, he was sitting there listening. (Sort of. He was exhausted at this point and beginning to fade.) No word yet on when they will remove the head drain... we are waiting to hear from the neuro surgeon, but missed him this morning.
His cognitive reactions are also improving. The speech therapists ask him a series of math problems to see when his focus fades. On Friday he faded after five questions; today it took seven until his answers slowed down. I read a book called, "Smarter" just before we left home and I wonder now if some of the IQ-boosting exercises presented in that might help - will review it again.
He is still emotional, telling his Mom tearfully, "I wanted to do more for you." I reminded him of what he said about our girls a few days ago, that he just wants them to grow up to be responsible, kind, good people and that that's what his mom wants for him, not anything money can buy. He then told me that I was the best wife in the world. Good to hear, even in the circumstances... :-)
The girls are emotional too, thought they are reacting differently. Yesterday we found a nice Mass with a great homilist (Our Lady of Lourdes parish) who spoke about the Eucharist and the centrality of it. G even looked up at me during it and said, "this is WAY better than our church" (where we have ongoing complaints about the general lack of enthusiasm for any element of faith). However, both girls had been reluctant to go in, expressing a lot of anger at God for "letting this happen." I was glad to see them express their anger and glad to see it expressed as anger at God, not disbelief, but I'm sorry I'm not able to make this whole ordeal easier for them. G in particular has been very enraged, finally telling Charles yesterday, "we don't do anything except talk about you. I'm the kid. You should be thinking about ME!" While this sounds rotten, it also struck me as a normal and very honest reaction, probably close to what we are all feeling on some level. I've always admired her ability to understand herself and express herself appropriately. K has been a champion, just a little more affectionate than usual and teasing her sister a little less, both of which are helpful.
Prayers are working. Still hoping for a plan to get us back home and Charles in rehab there. So this week we are praying for the safe and permanent removal of his head drain, for a move from Critical Care, and for a speedy solution to get us all home soon.
Our friend of a friend of a friend who loaned us her lovely home while she was on vacation returns tonight, so after leaving the hospital we cleaned and moved out (with eternal appreciation for Kelly... and Cynthia, who connected us). We are now camped at another lovely Denver home - generous friends of wonderful friends who left this morning on vacation. So our prayers are also prayers of gratitude for such good, kind, generous people... and for Charles' continued improvement.
SATURDAY, AUGUST 1, 9PM
An interesting day. Charles looks great. He sounds like himself. He had an hour of PT this morning and was exhausted, but did decently with it.
We're starting to settle into a routine in which we visit the hospital, arriving for therapy and rounds, then go have an adventure with the girls, then return to the hospital. As with all routines, this one is flawed by my lack of discipline: I mean to make the hospital trip short, but have a hard time pulling away, which means that the girls are getting a bit frustrated and bored. But I'm improving...
Today we ventured as far as Manitou Springs, which should be a long hour, but which was made longer by bad traffic. We had a great visit, but 45 minutes from the hospital they called and put Charles on the line. He wanted us to hurry up and get there, his conversation torn between stroke-recovery Charles, who is pretty needy, and Dad/Husband Charles, who cautioned us in the next breath to drive carefully.
When we got there, he was fine and didn't seem to remember the phone call. He asks the same questions repeatedly and is still confused about where we are, thinking that we are in Venezuela or Brazil together. He literally will ask about someone, i.e. "Where did Keith go" and when we tell him, "Keith is in Las Vegas" he'll say, "really? I thought he was right here." It is weird and a bit exhausting to have repeated conversations and to feel like none of them are grounded in reality. In addition to asking about our South American destination, he again assumes that we are camping or hiking and asked once, "how far will we hike tomorrow?" I so wish I could give him the answer I'd most prefer... he didn't even remember when he said that that half of his body in mostly immobile right now.
But he's getting better, this is normal, and we're hanging in there. I do hate leaving him at the end of the evening, though. He seems so alone in his disorientation.
FRIDAY, JULY 31, 9AM:
Just saw his neurologist, who said that the plan... if all goes well... is to remove the drain Sunday and then, if his catscan is clear on Monday, move him out of Critical Care. Best, he said that they will then begin working on a rehab and transportation plan, so we could know more about when we can go home by the end of next week.
Hurrah! Working toward goals helps!
He is emotional this morning, but knows where he is. For some reason, he's obsessed with making sure that we all go horseback riding somewhere. (That doesn't interest me at all!) He's also talking about seeing people who haven't been here, but he is happy with the false memories and the neurologist said that as long as he is happy, they aren't worried about the false memories, that it is all part of the brain's healing process.
Thanks for the continued prayers!
THURSDAY, JULY 30, NOON:
He woke up early (3AM) asking for me, but though I've told them that they can call, they kindly opted to talk him out of it instead. He's been up since then and so is tired, but had a good physical therapy session. I helped and it was good to feel useful. His left arm is getting more motion, but he doesn't have much in his left leg. Yet.
I massaged his feet and trimmed his toenails and Tony helped him to shave. Plus I retrieved his glasses from the car. So now he looks less like a camper and more like the young handsome man he usually presents.
The feeding tube is coming out - hip, hip, hurray! Food today is going to veer back toward vegetarianism, since he complained so much of his stomach after eating it three meals in a row yesterday. "I don't need meat again for ten years!" was, I believe, his exact quote. His vegetarian wife and kids are quietly high-fiving one another. :-).
BP currently down. No pain now. And it was good to see him sitting up with his legs on the floor during therapy. Except for the hospital gown, the cords running from his body, and the three therapists surrounding him, he looked almost normal. His voice sometimes sounds normal, too, which is nice, though he chooses to sign during therapy, saying that he needs to focus. Whatever works.... He still seems mostly confused and disoriented. He told the physical therapist that she was a Slytherin, which she accepted with a smile, though her assistant objected, saying "nope, I'm Griffendor." (Harry Potter references.)
I didn't hear his nurses do an orientation check this morning, so I did one myself:
What's your name? "Virgil."
What's my name? "Spitfire."
Where are we? "I can't stand to hear that question one more time."
I *think* he was joking on the first two and serious about the third. More hope, I think.
WEDNESDAY, JULY 29, 3PM:
Charles seems more confused today and still a bit melancholy. The neurologist said that the confusion is normal. He wasn't in the mood for more phone calls.
He got very emotional, saying lovely loving things to me that I never hear enough. He spoke about our girls, (who were at the zoo), saying that what he wants most for them is that they grow up to be nice, responsible, loving people who make the world a better place. (They do that already, but I know what he means).
His therapy went well and he demonstrated more use of his left hand today. No movement in his left foot, though. The cat scan came back "stable," which is another way of saying that he still has too much blood on his brain and the drain needs to stay in. Unfortunately, that's also another way of saying that he has to remain in the Critical Care unit. Oh well, they said that it usually takes one to three weeks and we've "only" been here one, so we're still within expected improvement norms.
I saw this on a bumpersticker as I parked this afternoon and think it might be a new family motto: "Life isn't about waiting for the storm to pass... it's about learning to dance in the rain." We're dancing, all right. Worn out and worried, but doing our best to celebrate the peaks and keep moving through the valleys.
TUESDAY, JULY 28, 8PM:
Charles was awake and making jokes again this evening, doing some of his physical and mental exercises even without the therapist present. He ate a full dinner - chicken fried steak, which happily reminded him of a line from one of his favorite television shows in which the character complains that "meat shoudn't be used as an adjective!" He even made a few phone calls, including leaving a message for his uncle and aunt in Pennsylvania, talking with his aunt and uncle in Virginia, and calling his friend Pete in California. His speech is good and at times even normal, but sometimes he pauses as if to wait to remember what to say next and his wit didn't always translate over the phone. I love that he is trying to be lighthearted, though, attempting to reassure those with whom he was speaking (especially when, ahem! someone started crying at the very sound of his voice :-). He has said repeatedly that he doesn't want people worrying about him.
He still seems to have a lot of false memories, saying things like, "when we saw so-and-so yesterday..." even though he hadn't and he volunteers information that normal social filters would not usually permit. He asked about his grandfather again and when his Mom reminded him that Charles had been there when he passed, he looked away sadly and said, "I know that." When I immediately reassured him that he was getting better every day, but that I knew forgetting must be hard for now, he looked alarmed and said, "what have I forgotten? You have to tell me...." A reminder to myself not to dwell, even reassuringly, but to correct and move on.
As a Dad, he is still his protective self, asking what the girls are doing to have fun. When I told him that they'd been swimming at a recreation center we discovered, he got concerned, saying, "you know that my mother can't swim if they need help!" Then I reassured him that I had been there too and that I'd kept my eyes on them carefully because I noticed that the lifeguards weren't watching them at all. He nodded approvingly, still oriented toward care and love of our girls.
He enjoyed the cards that he got yesterday, especially the homemade one from some of the kids in one of the science class he teaches (thanks, Angela and Aiden) and laughed with appreciation at the video the R&B clan sent us, telling us, "this is a song just for me. I'll bet no one has ever done that for you!" (The girls loved it too - watching it was the happiest I've seen them since this started. Thanks!)
I've posted an address below (under Monday's news) for cards, for those who have asked where to send them. If you'd like to chat with him, please do NOT call the hospital - they are a bit wary now of the number of people who have called claiming to be one of Charles' siblings. Shoot Ernestine or I an email with a phone number and we'll see what we can do. (Mine: madtortuga@aol.com).
Your prayers are working; thank you so much!
TUESDAY, JULY 28, 2PM:
Movement in left hand and arm; very little, but definitely there. A positive! Cognitively, he seems almost completely like himself, including his voice. But he's got head pain again and so has been sleeping a lot due to the pain meds; that makes him seem less Charles-like, as he has been groggy and slow to respond this morning. He's also a bit confused as to time/date sometimes; for example, he was certain that we should be able to watch the All-Star games on TV. He knew that they are always the same week as his birthday, but forgot that two weeks had passed since then.
In a more wakeful moment, he asked when he could go home. He also asked clearly for "the plan for today," telling me that he wants to know "what to look forward to and what to dread." I put the therapy on the "look forward to" side and the fact that he is still here and uncomfortable in the "dread" category. Meals might also go into the look forward to category - he ate a whole plate of pancakes and vegetarian sausages this morning, so we will try to tempt him with dinner options...
MONDAY, JULY 27, 9PM:
A groggy evening for Charles; they gave him pain medication, so he didn't seem much aware of our attempt to have another family dinner. On the positive side, when they woke him, he passed the orientation test groggily, but with flying colors: he knew the year, the city and state we are in, and his full name. Hurrah!
A rough day for the girls. We found a neighborhood recreation center so that they could go swimming, which was good, but they are grouchy and tired and probably scared and angry, too and all of that seems to be catching up. Teasing, tantrums, and unreasonable requests, especially from G. They need some quiet and some rest; fortunately, they have finally fallen asleep. After navigating their emotions all day, I'm worn out but too wired to sleep...
The morning was a peak; the afternoon/evening definitely a valley. Hopefully we are headed up again tomorrow; fingers crossed.
Thanks again for all of the prayers.
MONDAY, JULY 27, NOON:
Peaks: He wiggled his left finger! He pushed with his left leg! He showed some resistance with his left arm!
Still waiting for the BP to lower and the brain scan to clear; there are two spots within the brain that still need to drain.
They also did cognitive tests and showed that Charles is, well, basically... (ahem) still a lot smarter than me. Able to subtract, add, multiply. Some stumbling while answering, but then he got the correct answers. When asked where he was early in the day, he thought he might be in northern England, but later knew enough to answer some orientation questions with humor and love:
Are you married? "Happily."
Do you have any kids? "The two very best."
How long have you been married? "Not long enough."
He's also fighting nausea this morning, but the therapists had him work through it. He seems exhausted, but he's fighting and knows he's seen some triumphs today, so that's good.
Thank you for the ongoing prayers!
SUNDAY, July 26, 8PM:
We leave the hospital every day in the mid-afternoon when their shifts change and visiting hours are suspended. The girls and I were getting our shoes on to go back for evening hours when the hospital called. That's always a heart-stopping number to see, but the nurse on duty simply wanted to tell us that Charles had been given his dinner, but was declining to eat it until his wife and kids arrived. Joy! We rushed over with our own dinner snacks and sat down together for a Sunday evening family dinner, complete with prayers of gratitude, of which we have many. Charles didn't eat much, but he ate something and that's progress.
He's not complaining as much anymore; his headache seems gone, thank goodness. Blood pressure remains high, but about ten points lower than that which the nurse had been so worried about last night. They predict that it may take a few more days to normalize at a lower rate.
Leaving the hospital tonight, the nurse on duty reported triumphantly that Charles responded correctly to each of her wellness questions, the first time he'd been able to thus far. (Earlier in the day he had told us it was 1991.) She said, "he is obviously extremely intelligent. Last night, when I asked if he knew where he was, he started naming constellations I had barely heard of!" Today, after dinner, he asked to share grammar jokes and we progressed from there to science jokes, even some new ones that the kids hadn't come across when prepping for their TV show earlier this summer. It is interesting to see his brain at work, healing... some of the wittier jokes he got before anyone else, whereas others caused him to make comments that appeared to be off-topic or on a tangent. But in either case, he is speaking more and more clearly and it is wonderful to hear his voice.
In addition to improvements (I so like peaks more than valleys), we are grateful today for visits from Charles' brother Tony; my cousin Chris, his wife Tina, and their kids; and my cousin Michael with his wife Kim and kids.
The prayers are working; thank you so much!
SUNDAY, JULY 26, NOON:
Physical therapy started AND he ate his first solids - a few bites of cantaloupe. Two big milestones. The therapy seemed pretty productive: he was a bit confused about the day of the week (but then, so am I) and the year, but knew other things and responded appropriately to many questions. He demonstrated limited to no use of his left side, including the vision in his left eye. He seems exhausted, not surprisingly, and still emotional, expressing concerns about "how long he has left." We reassured him, with supporting medical backup, that there is no reason he shouldn't live longer than his own grandparents (90s and counting).
I was present for rounds and our "dismal doctor" admitted again and with more feeling that he has been very happily surprised by Charles' progress. It was a relief to see Charles sitting up, even though doing so clearly took effort.
Progress is good! It is still so very strange to be counting thankfully for small graces such as swallowing when a week ago today he was fully healthy and the four of us were exploring the incredible beauty of Zion National Park together. We saw the most awesome mountain goat when we entered the park this time last week; I'll try to post that photo soon as a symbol of resilience, strength, and grace, all of which Charles has been demonstrating so well.
He feels your many prayers, and so do we. Thank you!
SATURDAY, JULY 25, 6PM:
Peak: He passed the speech therapist's swallow test and can now eat! So far, a few sips of juice and those made him nauseous, but it is progress.
Valley: His blood pressure is spiking so much that he's maxed out on the meds they can give him and the medical staff are concerned. So now we are keeping things quiet and praying...
SATURDAY, JULY 25, 2PM:
He is awake more today. Blood pressure remains high and he seems more uncomfortable from the headache, stomach; he is even complaining about his knee. He says that he is hungry and thirsty, too, but he can't eat because they don't think he can swallow. He has no feeling on the left side of his body.
I don't know how to describe his waking time. He knows who we are and asks about other people, but is also forgetful, asking repeatedly for his mom, though she is right there. He also expresses repeated surprise that we are in Colorado and once asked how his grandfather is, though he died nine years ago. Outside of his immediate family, the other person whom he asked about was Father Steve, our friend who celebrated our wedding with/for us.
He is using his limited sign language a lot, which is hard to follow because he knows the ASL alphabet better than do I. He continues to use Spanish phrases, which amuses the girls since he rarely did so before.
He responds best/most Charles-like when the girls are around, joking with them and accusing me of being a "bad mom" because I haven't bought them any ice cream since we've been here (I got them some since, promise!) That said, he "reminded" them of an event that he believes happened yesterday and to the three of us sounds more like a bad dream or a television episode. When they couldn't remember (because it couldn't have happened) he got upset, saying "You think I am crazy." Another time he said tearfully, "there was so much I wanted to do with my life." That was hard to hear. On the positive/humorous end, when I left to use the restroom, he told the nurse, "she left me for Johnny Cash."
I'm starting to look up stroke recovery details so that we have a better sense about what to expect. I feel both flummoxed and then, when I get a chance to reflect, not terribly surprised. His reactions cross the gamut of emotions, which is reasonable. Most of what I have read thus far confirms what the medical staff have said, that each case is different, recovery is rocky and lengthy, and each day has to be taken one at a time.
We are missing family terribly today, so sad that we aren't at Tori and Corey's wedding, which we had planned this trip around. Charles has said repeatedly, "please don't leave me," so the girls and I are agreed that we made the right choice not to go, but we're sad nonetheless to miss both the celebration and the chance to see family whom we don't see often enough. Our best wishes to the bride and groom for a wonderful celebration and a lifetime of love! Love you...
SATURDAY, JULY 25, 6AM:
Yesterday was a hopeful day all around. During morning visiting hours, he woke up for about 20 minutes and asked about the girls. When I told him that they were at the aquarium and showed him a picture of them that my mom had just texted me, he took the phone and kissed it. He also asked about his siblings and nephew, then gesturing a request to have his teeth brushed and his face washed.
During the evening visiting hours, he woke up for a slightly longer period. The girls were in the waiting room and he asked for them right away, mumbling specifically to "sneak G in." (She's underage for admission to critical care.) When they were both there, he bragged about them to his mom, told K that she should play baseball with his mom, bragging about his mom's skill and softball nickname, and otherwise was very specific, very loving, very happy to see everyone. His voice is often hard to understand, he gestures instead of speaking at times, and he uses very short phrases when he does talk. He has a sense of humor, too, telling me at one point that if Colorado has any fires, he could put them out (when he had to pee); another time, when his Mom and I told him that we loved him, he responded in typical Charles way, "I love me too."
Practically, it was a miraculously hopeful day, too. Our friend Cynthia found a friend of a friend who was going on vacation for a week and offered her house to us - it is about six minutes from the hospital, even closer than the hotel. This wonderful stranger told us that even when she returns, she can stay with a friend and we can continue to live in her house - an offer that I couldn't possibly take her up on, but the mere offer made me feel blessed beyond words. Later, we had two other offers from friends with friends who were in the Denver area, going on vacation, and willing to open their homes for the next week. People are good and we are awed by the care and concern that manifested in such quick practical solutions. Thank you.
We are deeply grateful for the shared stories of stroke recovery, the practical recommendations for fun things to do in the Denver area (dinosaur tracks!), and the prayers, the prayers, the prayers. Charles told us last night just before visiting hours ended that he can feel the prayers.
Thank you.
FRIDAY, JULY 24, 11AM:
Charles is still sleeping, but wakes for a few moments every half hour or so. When he does, he indicates discomfort with his feeding tube and headache, expresses momentary recognition and interest, then settled back to sleep. His grip is still strong in his right arm.
Puck is with my Dad and his sister Ahwahnee, having fun I am sure. The girls are on a field trip with my Mom to a local museum and are also having fun. They were bickering and being mildly obstinate this morning, so that felt like a welcome return to normal.
The doctor told me this morning that Charles is doing better than he had expected. (This is the same doctor who told me initially that there was a good chance Charles would not make it, so coming from him this is very good news.) He is on new blood pressure medication and is responding, so fewer alarms are going off in the room, also good news. They have him on a new, experimental medicine to break up the blood clots in his brain - the bleeding stopped, but the accumulated blood doesn't seem to be decreasing, despite the amount we can see is draining out. This also looks hopeful.
Last night was our first good night's sleep in three days and even thought I woke up every 90 minutes or so in a panic, it was a great relief to sleep and to see the girls doing so as well.
Funny story: they began feeding him through a tube yesterday (and will move him to a stomach tube soon), but before they did, it had been some time since he had eaten. One of the things he said in the middle of the agitated night was, "yo tengo hambre!" Now our wild hopes include the possibility that a stroke can stimulate your language learning abilities, since I didn't know that he knew any Spanish at all. Hee, hee...
Laughter helps, and so do prayers. Thank you for so many of those....
FRIDAY, JULY 24, 8AM:
Yesterday was noneventful; Charles must have been exhausted from being agitated and awake so much the night before as he slept all day. The ICU nurse said that this is to be expected.
I know that it is good for his healing, but it also felt like one of the emotional "valleys" that the nurse described to me when we first arrived at the ICU - to see no visible improvement all day and to have such limited responses to us. He opened his eyes a few time, squeezed our hands lightly, wiggled his toes, whispered a few words about his discomforts, and then went back to sleep.
We contacted the local Catholic chaplain, who met us in Charles' room to celebrate the Sacrament of the Anointment of the Sick. That was comforting, if also hard. I'm glad that the name of the Sacrament was changed, but it still felt momentous. Glad that the girls don't know/feel that history.
We very much appreciate everyone's prayers and the stories of other loved ones who have experienced this and fully recovered. Really, that means that world.
Other wild needs:
1. Our wild hope right now is to find a cheap (free?) place to stay close to the hospital that is family and pet friendly. The hospital has one possibility and are checking if it is open - fingers crossed. Our hotel is great, but we can't stay here long term. Our second option isn't bad... to stay with family who are about 75 minutes away (love you Aunt Terry, and thank you). Manitou Springs is a little further than ideal, though, so if anyone has any connections in the Englewood area of Denver who just happen to be out of town this month and open to sharing their home, let me know.
2. I'm trying, day by day, to determine what is best for the girls, balancing Charles' desire to see them, and theirs to see him, with a need to give them a break from the scariness of it all. That said, we don't need a break from each other - we've always been a family who is intentional about spending time together and instinctively I know that this isn't the time to change that. They've slept in the waiting room for two nights now and have been completely helpful, mature, loving, and wonderful. But knowing this is going to be a long process, I am trying to figure out the best way to meet their anticipated needs. If anyone has been in this situation with kids and has advice, I'd appreciate it. Also, if anyone has a list of "must see" things for kids to recommend in the Denver area beyond the Aquarium and Natural History Museums, let me know. They have baseball gear and their rip sticks with them, which will help in terms of keeping them active, outside, and distracted.
Thank you again for the prayers. Those remain our primary and ongoing need.
FIRST UPDATE, WITH BACKGROUND: THURSDAY, JULY 23
We started the day camping in Monument Valley, up late the night before with a family picnic and star gazing. The night sky was spectacular, far from city lights, and we could see the Milky Way clearly stretched before us. As the four of us (plus Puck) cuddled in the tent together, I thought, "life doesn't get any better than this."
We got up super early for the morning sunrise, which was also simply amazing, rising behind the fabulous monuments of the valley. I literally choked up with tears as we watched the sun rise, still high from our lovely evening and awed with the magnificence of the morning desert colors. We explored a bit, packed up camp, and drove on to Four Corners and then Cortez for breakfast at a cute diner. Then to Mesa Verde, where we explored the ancient ruins. Another spectacular day on a trip that has been really amazing and fun.
Until.
Charles was driving - we were headed from Mesa Verde to Sand Dunes National Park - and I noticed that he was on the wrong side of the yellow line. The road was curving and he often cuts the curves a bit so that K doesn't get overly carsick, but there was something about the way he was doing it that seemed off. When I asked him what he was doing, he startled me, saying, "I don't know." He said, "I was listening to radio discussion about the Planned Parenthood videos and I got really, really mad, now I feel dizzy." I then had him pull over and I drove, assuming he was tired and perhaps feeling the altitude (we had been between 7,000-10,000+ feet for the last few days and were still that high).
He joked and talked as we drove on, making jokes with he girls and otherwise acting normal. Then he suddenly insisted that I pull over immediately so that he could pee. When I pulled off the road, he said that he couldn't get out of the car. Perplexed, I turned the car off and came to the passenger side. He was yanking at his legs with his arms, trying to get them to move and was becoming increasingly agitated. I told him to lean on me and he did, but then when he got down he put his entire weight on me. I fell and he did, too. I got him into a sitting position and K was helping me help him back into the car while G held Puck in the back seat so that he wouldn't run into the highway. A family pulled over to see if we needed help and, like me, assumed that he was suffering from the altitude. They helped drag him into the back of the minivan and advised me not to go over the pass, as we were entering an even more remote area in which we could expect no medical services. (Thank goodness for that advice, which was potentially life saving and the opposite of what I would have done otherwise).
K helped me navigate to the nearest clinic - 25 minutes away - and also called my mom. Charles began throwing up and when we arrived, complained of a sudden, acute, headache. The medical staff at the clinic heard that and immediately put him on stroke treatment, then told me that they needed to medvac him to a stroke facility. In the meantime, both one of the paramedics and the doctor on duty told me - horrors! - that there was a good chance he wouldn't wake up again once sedated because of the seriousness of his stroke and advised me to spend every second with him, including letting the girls tell him goodbye.
There is no way to describe that time.
I did whisper in his ear before he left, asking him to promise not to leave us. He nodded affirmatively and I am doing my best now to hold him to that promise, reminding him of it daily. G had made a beaded necklace for him for his birthday the week before and he was still wearing it, so we took the rosary our friend Susan had given him long ago when he was confirmed at St. Dominics and wrapped it around the necklace. Making the call to his mother was more agony; unspeakable words that I had to say on a connection that kept cutting out.
We stayed with him as they loaded him into the ambulance to take him to the plane, and his last gesture was the sign for, "I love you" as they closed the doors. The girls and I filled up with fuel and began, at about 9PM, the "eight hour" trip to Denver (it was actually closer to five and a half, thank goodness.) We took dark two-lane roads through the mountains and remote towns with few services through the rain. I pulled over just to talk with the Denver hospital and give consent for an emergency procedure that he needed.
When we arrived in Denver at about 2:30AM, he had already been admitted and they had given him a breathing tube. We slept in the waiting room and, well... waited. The doctor we spoke with in the morning had pretty dismal possibilities to share: he confirmed that it was a massive bleeding stroke and said that there was a strong possibility that Charles would not survive. He was under strong sedation and nonresponsive, which agonizingly seemed to confirm the worst.
However, the day got better. We learned more about strokes and the areas affected in his brain. We learned that hope is certainly still appropriate and that while full recovery may be optimistic, there was no reason not to hope and plan for it. We also learned that stroke recovery is full of peaks and valleys, so long term predictions are impossible, especially at this early stage. Best, they lowered the sedation medicine and he began responding, especially to the girls, smiling at them and squeezing their hands.
My brother and uncle surprised us at the hospital, Charles' mom arrived by mid-afternoon, and my parents got here shortly after that. (Many relatives in town for the wedding we had planned our trip around, plus we have family who live a long hour away.)
We finally left the hospital when visiting hours were just about over and went to a hotel room to get much-needed sleep. Just when I was sorting the laundry and trying to clean the vomit from our bags, they hospital called to say that "he is asking for his wife and kids." We raced the ten minutes back and he was indeed asking for us. The girls stayed for a while and K whispered results of recent presidential contender polls that she'd heard on the radio and knew he would like. They are too young to officially be allowed in the ICU, so they waited outside and napped with Charles' mom Ernestine. He was pretty agitated and asked repeatedly to "get me out of here." He was very agitated and forgetful, but at the same time remembered a lot of things as I tried to talk with him about topics that would distract him from various discomforts. About 3AM he had calmed down and slept deeply, so that's when I took the girls and Ernestine back to the hotel.
It was really hard to see him like that.
It is Thursday now and after a few hours of sleep and successfully putting our dirty camping and otherwise soiled stuff into the laundry, we are back at the hospital. More accurately, I am here with the moms (mine and his) and my Dad is at the motel with the girls so that they can swim a little. It is hot here. Puck is with his doggie siblings (my parent's dog). Both our puppy and the girls have been flawlessly strong and resilient since this started.
More updates here as we know more. Charles is sleeping, which he needs. I am sitting by his side and can hear him snoring. We don't need anything right now except lots of prayer and for that we heartily thank all who have been doing so; we can feel the power of God's healing love in the improvements thus far and in the caring concern of the expert staff here.
Charles came home!
Yep, 12 weeks and one day after his stroke. Prayers arrived and were answered in many forms over those 12 weeks and we are grateful for every single one.
I got notified that he was coming home last minute; we (and his therapy team) were anticipating a later discharge date. But his insurance put pressure on the hospital and, voila! here he is.
He will still be in therapy nearly all day, most days. The difference is that he will be getting the therapy at home for now, with an anticipated return to the rehab center for out-patient therapy after a few weeks of home visits. (And a huge difference for me is that I won't have a four-to-five hour chunk gone from each day to make the drive to go visit him.)
It was wonderful to see his mobility in the house. We have ten steps to get to our front door, then a narrow set of about 12 steps to the landing, then another 12 to the main floor. Up and down; he's slower than he used to be, but navigates without trouble or pain. And he wants to drive to a local track tomorrow morning to work out!
He also got a job offer. Pretty good, to have that happen within five hours of arriving home, and without advance notice to anyone. But his reputation as a teacher has spread and someone organizing a science class for a "microschool" program came over to ask if he could do it. Bodes well for his confidence about recovering.
A final note: just as we were leaving - literally, loading the car in front of the hospital - a priest approached me and asked if I'd like to receive the Eucharist, suggesting that it would sustain me on this day of transition. (Charles had received earlier in his room.) I accepted gratefully and the girls received from their seats in the car. Standing there I was reminded of all of the times that we had received together during this journey and what a blessing it has been to encounter Christ in all of the people who have helped along the way. I was also reminded of a quote from Saint John Paul II, which we used in our wedding program:
"The most holy Eucharist contains the Church's entire spiritual wealth; Christ himself, our Passover and living bread. Through his own flesh, now made living and life giving by the Holy Spirit, he offers life. Consequently, the gaze of the Church is constantly turned to her Lord, present in the Sacrament of the Altar, in which she discovers the full manifestation of his boundless love."
Love... recurring in so many manifestations throughout this journey, sometimes wise, patient, and kind; sometimes weary and imperfect. But present throughout. We are so grateful.
SUNDAY, OCTOBER 11
Charles came home for about an hour, with two of his therapists, for a home evaluation. His first time home since July 16, when we left on vacation! See photo below for Puck's enthusiasm to see him. :-) Charles was happy to see the dogs, too, to lie in his own bed, and to show the therapists the stock of science equipment that he uses for his classes.
Afterward, they gave us a list of modifications that we'll temporarily need to make to the house; simple things that will limit his hazards. The awesome part of the visit was Charles' independence. From his hospital bed to the car, down the sidewalk and up both the front stairs and the inside stairs, into every room of the house, back down and out and back to the car, then back into the hospital he was completely independent. He had support available if needed (me and the two therapists), but he didn't need any help at all, not physically and not even with reminders. I expected him to be tired, but he's been working hard with these long days of therapy and wasn't even slightly fatigued.
An awesome milestone!
FRIDAY, OCTOBER 2
Our 'date' went well: Charles chose the restaurant that catered our wedding reception and two therapists and the girls came along. His job was to plan and execute the whole thing, from picking the place to getting directions, walking several blocks from where we could find parking to the restaurant, navigation of crossing a busy street at a slower pace, ordering, staying focused in conversation, etc. He did perfectly from the perspective of standards that he had set before he left and in the process he and the therapists identified additional goals to work on.
We're found that it is an ongoing adjustment for the girls to see these changes in their Dad. As adults, we are able to mostly focus on the improvements, but as kids, they just want Dad back the way he was and they are a bit impatient with anything less. He's more short-tempered with them, and they with him, so there is family healing still needed and we are looking forward to having the time together to get us there.
THURSDAY, OCTOBER 1, 4AM
Recent photos (lookin' good, handsome!)
 |
| Love, love, love |
 |
| With his new AHO cap on (Charles is Chair of the Board; the group provides resources and advocacy for foster youth transitioning to adulthood.) |
WEDNESDAY, SEPTEMBER 30, 2PM
Charles' therapeutic team met today: two Occupational Therapists, a Physical Therapist, a Speech Therapist, and a Neuro Psychiatrist. I've met them all before and they are all simultaneously nice and extremely competent, individually and as a team striking a great balance between kindness and appropriate pushiness. Best, they are really diligent about paying attention to the small things and in including Charles in their decision-making processes. As they said, he is not only part of the team, he is the most important member. Their approach to therapy as a participative, not directive, process therefore seems perfectly suited for his healing. Further, the conversation in this team meeting was perfectly timed to motivate his continued healing as he has begun to express increased (and understandable) frustration with being told what to do.
So, the rehab update is that he continues to improve, especially with the physical elements of his recovery. He is on the path to full independence and isn't far from it. He remains challenged in the areas of focus and so the discussion today centered on the difficulty in quantifying gains in this area, which is so much harder to measure than, for example, the time it takes him to do a physical task. As mentioned before, distractions have disrupted his rest times and thus created a problem for his recovery, pushing his initial discharge date back a week. Today the team (including Charles) decided to revert back to more basic therapies to focus on techniques that he can independently use to facilitate his ability to focus despite distractions. Their hope is that with a return to these therapeutic "basics," he will regain some of the lost recovery time and then quickly build the skills that he needs for his complete healing.
In the bigger picture, he looks great, still has a huge appetite, and seems much more like himself than he did not so many weeks ago. I ache for his frustration; at the same time, it seems so much more normal to be frustrated by a lack of full independence than to accept it complacently, so this new stage is clearly a sign of continued healing. He asked me to bring him library books about cognitive healing so that he could reinforce his own focus issues even when not actively with one of his therapists and it was great to see him taking ownership of his own recovery, another sign of continuing healing.
I spent quite a bit of time at the hospital this morning. After returning home, I got a surprise call from him, asking me for a date! He remembered many of the details of our first date and is working to recreate some of them, which is super sweet. Of course, this time we will have an Occupational Therapist and two awesome girls as escorts, the former there to help make sure that he focuses enough to navigate the various tasks associated with the outing.
WEDNESDAY, SEPTEMBER 23, 7AM
Another great visit with Charles last night. He called me during the day to report that he has officially retired his wheelchair; he now uses a walker. Hurrah! When we arrived he practically jumped up (well, not really, but relative to the ten minutes it used to take just to get him sitting) and walked himself down the hall to have dinner in the common room with us. Then he wanted to go to the physical therapy room and show off how well he does stairs! (The nurses wouldn't let him; there were no therapists around and they don't have that authority.) I love his enthusiasm, confidence, AND new abilities.
This is officially ten weeks since we first arrived in Denver and Charles lay in Critical Care, completely non responsive, on breathing and feeding tubes. How terrifying that was and what a journey these ten weeks have been!
Ernestine (Charles' mom) flew home this morning, after going through so much of this journey with us. Fortunately, she never had to see him completely non responsive, but she did see his early delerium, his nasty mood swings, and many agonizing and hard-won milestones along the way. We appreciate her love and dedication to Charles, her significant investment of time, and her quick response to this sudden crisis.
Visitation and calling restrictions (above in italics) are still in place; the rehab team feels that they are essential to Charles' healing. Charles completely approves of these restrictions and was part of their design, but he (and I) are getting a surprising amount of resistance to them. I was there yesterday when a call came through and heard the conversation; a loved one who called when Charles should have been resting and complained of "mixed messages." Charles wearily repeated the same rules and when he got off the phone complained, "I have been having this same conversation for three solid weeks!" One of the doctors on his rehab team has offered to speak directly to anyone still concerned; please contact me via email and I will connect appropriate inquiries to her so that Charles can focus on his healing.
Many prayers of gratitude for the successful milestones in this journey! Charles still hopes to help coach basketball later this year - fingers crossed for that...
SUNDAY, SEPTEMBER 20, 8PM
A glorious visit! Charles decided to show off and (nearly) effortlessly stood up and used a walker to walk around his room. This violated the hospital's safety rules, but he was clearly confident about it and that was awesome to see. Fantastic! Swim therapy begins tomorrow and he is excited; I think it reminds him of his post knee surgery recovery in college.
FRIDAY, SEPTEMBER 18, 8AM
Because his brain needs to rest, his calls and visits should be focused on positive, light topics. Remember that he had his stroke when his blood pressure spiked because he got worked up about the Planned Parenthood videos. Politics, family drama, financial woes... anything that would keep him up at night worrying should be avoided for a long while. For example, he's always been a worrier and a concerned Dad, but I've learned to be extra-sensitive in reporting what our girls are doing because he seems to worry even more than usual about things that even he wouldn't have blinked an eye at before.
He is working REALLY hard toward a full recovery. The mandatory rest times between therapy during his "work" day are designed to allow his brain an escape from all stimulation, even the happy stimulation of calls and visits from loved ones. One sign in his room states his commitment to "observe scheduled quiet rest breaks between therapy sessions." One therapist likened his work to studying for finals or working on an intense project at a job: at the end of the day full of such mental effort, most people need to "chill" quietly; even a fun family party or event takes energy. (Reminds me of when we were dating and he'd pick me up on a Friday night from work. After a very stressful week, my favorite "dates" were just eating junk food and watching a Sopranos marathon together. :-)
If you are worried that Charles is feeling isolated, be reassured. I was there when the therapy team approached him and he greeted the restrictions with unmitigated relief. He enjoys his visitors but admits that he needs that hour-long limit so that he can say goodbye without feeling rude.
Every stroke is different; Charles' biggest challenge isn't his physical mobility, but his brain's ability to focus. We are lucky; it was a massive trauma, but he is strong and his particular stroke affected his brain in ways that are allowing for quick recovery. For that we praise God every day.
A PS: Medical research supports the need for rest after this type of stroke:
Sleep becomes imperative... The brain needs to rest from all the physical work of creating new neural pathways. The post-stroke patient, like [a] newborn, feels assaulted, but is physically unable to move away from the stress. The only solution is to fall asleep! Here one can see that sleep performs two functions: that of restoration of the brain during slow-wave sleep (Himmanen, 2012) and as a means of controlling one’s environment. REM sleep allows the brain to sort out stimuli and to try and make sense of new input. Learning to think IS exhausting.
Psychologically, the ability to tune out overwhelming stimuli is quite important... to our wanting to grow and develop. Learning that one can have an impact on one’s surroundings is an extremely important developmental milestone in the development of consciousness. Tuning out serves to create a safe environment. A safe environment allows the amygdala to remain calm and to keep from triggering a hyper-vigilant. reactive response to possible danger. When the amygdala is calm, the hippocampus can learn and memorize new information – a vital task for the stroke patient ... (Taylor, 2012, pp. 18-19).
Often, sleep does not come easily to ... the stroke patient. ...In those who suffered a stroke, the
regulatory centers have been compromised and must be rebuilt. Too much
raw stimuli disrupts sleep and overloads the circuits. Sleep, which is
necessary to break the stressed, wakeful cycle, is not easy for the
overly stressed body to achieve. Having a schedule that has rest planned into it seems to help in learning to self-regulate.
The rhythm of an ordinary, low-key day has
an ebb and flow that fits the needs of the individual and is probably
good for all of us, but it is vital for the stroke patient ... for healthy development of new neural pathways.
And this, from stroke survivor and author of the bestseller, "My Stroke of Insight" Dr. Jill Bolte Taylor, on her own stroke recovery: "Occasionally friends came to visit, but GG recognized that social exchange used up my energy reserve and left me totally drained and not interested in working. She made the executive decision that getting my mind back was more important than visitation, so she stood as the guard at my door and strictly limited my social time. TV was also a terrible energy drain and I couldn't speak on the phone..." Note that she recalled these steps with gratitude, knowing (as Charles does) that they were essential to her healing. She also said that "for recovery, success was completely dependent upon our striking a healthy balance between my awake effort and sleep downtime. For several months after surgery, I was banned from the TV, telephone, and talk radio. They did not count as legitimate relaxation time because they sapped my energy, leaving me lethargic and not interested in learning." Reading this was great affirmation of the very clear orders from Charles' medical team.
And this, from stroke survivor and author of the bestseller, "My Stroke of Insight" Dr. Jill Bolte Taylor, on her own stroke recovery: "Occasionally friends came to visit, but GG recognized that social exchange used up my energy reserve and left me totally drained and not interested in working. She made the executive decision that getting my mind back was more important than visitation, so she stood as the guard at my door and strictly limited my social time. TV was also a terrible energy drain and I couldn't speak on the phone..." Note that she recalled these steps with gratitude, knowing (as Charles does) that they were essential to her healing. She also said that "for recovery, success was completely dependent upon our striking a healthy balance between my awake effort and sleep downtime. For several months after surgery, I was banned from the TV, telephone, and talk radio. They did not count as legitimate relaxation time because they sapped my energy, leaving me lethargic and not interested in learning." Reading this was great affirmation of the very clear orders from Charles' medical team.
WEDNESDAY, SEPTEMBER 16, 2PM
An interesting and long morning with the therapy team and Charles' neuro psychologist. The long and the short of it is that he is making progress, but it has been slower than expected, and they are especially concerned that he is too distracted, which is affecting his focus. They've actually added a week to his projected discharge date because of this, which is disappointing.
So, the neuro team has reinforced the rules (above in italic) in posted signs; visitors who exceed the number allowed or time allowed will be asked to leave by a newly diligent nursing staff. Further, his phone calls are now limited to the above hours AND to immediate family and very close friends only. They wrote on their instructions, "please encourage friends to send cards and well wishes, but avoid phone calls." I would venture to add "ongoing prayers" to this list of what we encourage.
After the team met, they came to talk to Charles and I about their conclusions. I felt somewhat sobered by their recommendations, but to my (somewhat) surprise, Charles heartily agreed, admitting that phone calls and even arriving mail tends to distract him and stress him out.
(Mail can be sent to our home and I'll bring them to him daily; he tends to worry a lot that he won't remember to ask someone to hang them up, so opening them together seems to relieve this concern. His "wall of love," a visual display of all of the cards he has received both since we've been home and when we were in Colorado, is impressive and growing. He is literally surrounded by expressions of love, which we both appreciate.)
All of this comes within a broader context of much improvement. When we started this journey, we weren't even sure if he would make it and while we saw progress every day, we still lived with a fear for many weeks of an unknown future. He's come a long way, appears very normal (and handsome), remains witty and charming, and is making improvements in all elements of the acute therapy that he is getting. Our goal now is to move toward a new normal for our family, which means minimizing anything that makes him feel like a sick man and focusing on a return to the work and family activities that he enjoyed immediately before the stroke.
We appreciate your understanding. If you have any questions, please feel free to email me. I'm glad to explain what the neuro team explained to me; much of this is different from any other recovery, but the important thing is that he is improving and the dangers are past.
Thank you again for the many warm wishes and prayers.
MONDAY, SEPTEMBER 14, 7:30AM
Rehab continued all weekend and Charles was exhausted, which is good - it shows his work and progress. The exhaustion isn't just physical; we've noticed that too much to think about - even good things - wears him out and makes it difficult for him to focus, which distracts from his essential therapy. For instance, this weekend the girls were full of news about their classes, the soccer opening-day parade, G's success in her soccer game, their lovely choir performance, plans for their TV show, etc. Many phone calls and visits from friends and family, therapies, updates, and news contributed to his exhaustion and when we left after stopping by late last evening he whispered to me, tiredly, "so much going on..."
It is interesting to see his introversion manifest. For me this has been counter intuitive because I would have thought that lots of cheerful stimulation would give him energy. On the other hand, especially with challenges to his short term memory, it does make sense that so much stimulation would be overwhelming. This is consistent with what I have read about this type of stroke and with the limited stimulation (phone calls, television, visitors) that the therapists have directed. With reluctance, I am going to limit even our kids' visits right now and we hope that friends and family will understand and similarly respect Charles' need to heal, sticking to the time frame listed above for phone calls and limiting visits to one group/family in his daily visiting hour.
I got the chance this weekend to discuss Charles' condition and recovery with a neurologist whom we know through K's baseball team. (He trains the best brain surgeons in the world, so as impressive as his title is, it might as well have read, "the smartest man in the world." :-) This turned out to be really helpful, to get confirmation that Charles' physical progress is extraordinary, reassurance that the mental tiredness is normal, confirmation about the appropriateness of his various medications, suggestions about other meds to consider, and recommendations for other resources, some of which I've begun to pursue. I'm so grateful for the time that he gave me to share his expertise, wisdom, and resources.
Prayers please for continued strength, especially for the more intangible elements of healing.
FRIDAY, SEPTEMBER 11, 9PM
I watched him walk during therapy today. He was in a harness that hung from the ceiling and slid along a track that allowed him to walk a large circle around the floor of the facility. He had a crutch in one hand and was carefully taking steps with both legs, doing a good job focusing on the miniscule bodily commands that we usually take for granted yet which he needs to relearn. I was impressed! The therapist kept asking him about his fatigue level and he kept reassuring that he was fine; seeing his stamina coming back also felt good.
Charles got a visit today from his cousin Keith and Keith's awesome girls. We all really enjoyed getting to see them and appreciate the effort that they made to visit amidst a busy weekend of college campus visits.
THURSDAY, SEPTEMBER 10, 11PM
Charles had a busy week, full of therapy. His rehab doctor told me today that when they release him, it will be only reluctantly because they all enjoy him so much. Well, yeah! :-) He's making good progress, which is awesome, and is beginning to walk with a crutch and a ceiling contraption that supports him.
For local friends: What To Expect if Visiting: Somehow, the prospect of visiting someone in the hospital (even a rehab center) can be daunting. Charles told me today, "yeah, people might be scared to see a big guy curled up in bed." It WAS daunting at first, and a bit scary, to see him acting so unlike himself. But that was many weeks ago...
Now, visitors can expect a very "normal" Charles. He looks handsome and strong and has growing strength even in his weakened arm and leg. He'll likely be sitting up in bed or in his wheelchair. He has full long term memory and will be happy to share jokes and stories. Visits from kids are appropriate and welcome; he loves kids and while his propensity to potty humor is less filtered, will otherwise not behave in any way that would be off-putting.
There are some subtle changes, which may or may not manifest. He is more inclined to be happily emotional, though this is decreasing. If he does cry when he sees you, know that this is normal and that it is because he is happy. His short-term memory is still a challenge, so you may have a long conversation about the Giants game last night, only to have him ask you two minutes later if you know how the Giants are doing. This is also normal and part of his stroke recovery. As part of this, he also repeats himself sometimes, telling a story that he may have told within the last 20 minutes. Be patient - and it is okay to gently remind him that you just had that discussion, without belaboring the point. He also gets tired quickly, sometimes in obvious ways (i.e. abruptly announcing that he needs to go to bed) and sometimes in ways that manifest only the next day (difficulty focusing on his therapy because he is tired). For this reason, this therapy team is sticking to the one-hour a day, one visitor/family an evening rule.
That is also the reason for the evening-phone-calls-only rule. I was there today and saw his distraction when phone calls interrupted an important conversation with his doctor. He doesn't always remember that these calls should be confined to the evening, so he needs all of us to support his healing by remembering for him.
When we first arrived, my instinct was to surround him with people and many wonderful friends obliged, which was such a blessing. The restrictions on visitors and phone calls were instituted shortly after by the therapy team (not me) when they noticed the degree to which these visits were tiring him and thus potentially delaying his recovery. Interestingly, Charles was talking with another patient after dinner today and admitted that when he has lots of stimulation (people, calls, etc.), he feels so worn out that all he can think about is his desire to sleep. He looks and sounds strong, handsome, and normal though, so this need for rest is somewhat hidden.
The therapists don't even allow him to watch television except during the evening hours, not because they want him to be bored, but because his very real job right now is to heal. They have explained that to do so requires that his brain focus both on his therapy and on the mandatory rest times in between active therapy sessions. He really is too busy to be bored and he knows that he is surrounded by love through the many cards, letters, evening phone calls, and daily dose of evening visitors that he has received.
He (and we) are so very blessed; thank you for the ongoing friendship, prayers, and support.
SUNDAY, SEPTEMBER 6, 1PM
Aggressive therapy continues daily with Charles' new "work" day composed of two sessions of Occupational Therapy (OT), two sessions of Physical Therapy (PT), one session of Speech/Cognitive Therapy (ST) and (usually) some acupuncture, too. He is often tired by the end of the day, but the effort is paying off, as Charles is seeing daily improvements. The most noticible one to me isn't cognitive or ambulatory, but with his appetite; when his food comes he eats without prompting and eats everything in front of him. When the girls, Ernestine, and I walked in one night late this week, he barely paused from eating to greet us. This FEELS healthier, which in turn feels good.
He's enjoying his evening phone calls and visits from family and friends and now gets regular visits from Father Steve, who brings him both friendship and the Eucharist. Among others who came or called this weekend were Patrick and Cristina, friends who went through such a similar adventure and recovery nearly nine years ago. Hearing more about their process was practical and helpful; Charles got some encouragement and I got helpful tips on when and how to best advocate for Charles' needs.
THURSDAY, SEPTEMBER 3, 6PM
Charles seemed strong and content this morning, then tired and a bit repetitive/confused during the afternoon. Hoping that is a sign that he is working hard and improving. He walked a bit today with just one hand on a rail, which is serious progress.
The girls started classes today and I taught one of Charles' classes (science for seven and eight year olds), which went well but was also kind of sad. I started by explaining the anatomy of a stroke and answering their questions about him. Their concern and serious questions were awesome, though I found myself blinking back tears. Before and after, he called to ask how it had gone and kept insisting, "don't bore my students!" I did my best, but I know I don't have his charisma. Still it is hard to be bored by edible coral polyps (we are studying coral reefs), so I don't think I've lost anyone for the long run.
WEDNESDAY, SEPTEMBER 2, 6PM
He had a rough night - after cautioning us about the need for rest, the hospital staff woke him multiple times and he was grumpy when he got up in the morning. I made sure to talk with the therapist about that and she was immediately upset and apologetic. Better yet, she took immediate steps to make sure that won't happen again. Now we are working to fix other minor things related to his day-to-day living that I hope will give him a greater sense of dignity, comfort, and (ultimately) healing...
It is so hard not to be able to visit him more often and for longer periods; he is doing better with it than I am. Fortunately, the therapy instructions synch with our scheduling needs, as the girls' classes begin this week and I have needed to prep for mine, which begin this week with the kids and next week for my adult students. Life is easier at home than it was in Colorado because there are fewer new challenges (finding lodging, arranging transportation, getting food, finding something to do with the kids), but still full of busy needs related to homeschooling, working full time, and being there for Charles as long each day as his therapy recommendations allow. I'm grateful to be home and also praying for his full and quick recovery. Fall sports aren't going to be the same without him coaching and certainly the students in his science class will miss him (I can't begin to replicate his style, even if I am using great resources from the Ca Academy of Science.)
One interesting 'silver-lining' to this entire adventure has been the many conversations I've been privileged to share with people about prayer. I reflected on that today as I stood talking with one of our wonderful neighbors and he shared the many ways his family has been praying for Charles. It feels like such a precious gift - both the prayers themselves and the shared conversations - and a is a reminder that in spite of all of the difficulties, we are enormously blessed with love.
TUESDAY, SEPTEMBER 1, 11PM
A busy day. We visited twice, which is no small feat given the distance (about 1.5 hours each trip) and the traffic. He had a productive day, but seemed to be confused and fearful in the evening, perhaps due to fatigue. He was certain that our morning visit had been the previous day and cried in fear and confusion when he realized that his perception was so far off reality. I ached for him, but he seemed better by the end of our visit. I'm praying that he rests well so that he continues to make good progress. His nurse projected that he may be walking (with a walker) by the end of the week!
MONDAY, AUGUST 31, 11PM
I sat with Charles through most of his numerous therapies today, getting to know the therapists and seeing Charles' reactions to them. I am very impressed and pleased: he had OT, ST, PT, then PT and OT together, then acupuncture, then a group therapy session. One of the therapists said, "most people think of hospitals as lonely places, but this isn't a lonely place at all!"
Over the weekend, Charles had lots of evening visitors, which he (and I!) appreciated, especially since we were en route back to him. However, the therapists want him to increase his ability to focus, focus, focus, which means that they are scaling back his visiting hours. I learned today that his physical capacity isn't in question, but his ability to focus is what has been most affected by the stroke, so his inability to walk, his likelihood of falling as he re-learns, isn't a matter of teaching his muscles what to do as much as teaching them to remember to focus on the task at hand. If he is starting to take a step and gets distracted, for example, by a thought about a movie he saw earlier, he may forget to engage the relevant muscles and fall, not through muscle weakness, but through his brain's inability to stay focused.
To that end, the hospital has limited his visiting hours to one hour a day (6-7PM) and has asked that only single visitors come at a time. He's also limited from other distractions - i.e. he shouldn't be getting phone calls except between 5-9PM and isn't supposed to watch any television at all during the day. His entire focus is on therapy, rest, then more therapy, then more rest (which is really part of his therapy). If you want to come visit him, shoot me and email and I'll coordinate his 'social schedule'
:-) (madtortuga@aol.com).
He seems happy and relaxed and his therapy went really well today. He used parallel bars to walk and did so with limited support from his therapist. The 10-20 steps that were a major accomplishment even late last week came seemingly easily already today.
Among our wonderful visitors this evening was our good friend Father Steve, who celebrated our wedding with us. Tonight we visited and prayed and he shared the Eucharist with Charles, which brought Charles to tears for the first time today. A sweet evening with good friends; thanks to all who have visited him and welcomed him (almost) home.
MONDAY, AUGUST 31, 11AM
All back in CA. Whew! Left CO at noon on Saturday and arrived Sunday evening; my parents and Charles' mom left at the same time and arrive today. We love Colorado and so appreciated the hospitality that so many showed us there. Special thanks to Mike and Terry for hosting us during the last two weeks and to my parents and Charles' mom for doing so much and helping to entertain the girls. They have all been with us since the day after Charles had his stroke and we appreciate the sustained moral and practical support.
Photos soon to follow from "America's loneliest road." Seriously; it is remote and wild. America is very, very huge (and we only drove across part of it).
Most importantly, we are grateful now that in this new facility Charles seems happy and is already getting stronger. Fingers crossed for continued rapid recovery now that he is truly focused on rehab.
SATURDAY, AUGUST 29 11:30AM
Charles has called several times and sounds upbeat and pain free. He expects (and has begun) a busy day of assessments and has been told that his days from here out will be very busy and very exhausting (and hopefully very productive, too - we want him coaching basketball again by late November :-)
FRIDAY, AUGUST 28, 11:45PM
An unbelievable day. Unbelievably long....
It started at 2AM when I woke, then again at 3:15. I felt like I was having a panic attack - couldn't breath, stomach cramping. I tried to rationalize and pinpoint the stress, but no one thing seemed to be worrying me; must have been the cumulative stress of everything planned for the day, plus the shock of getting out of the hospital-to-house stupor. I finally jogged a little and that helped, then dressed, said goodbye to the girls, and began the 70-minute drive to the hospital.
There I woke Charles up and got him ready, then took down the "wall of love," carefully packing it with other possible needs for the day. Charles was tearful about saying goodbye to the marvelous staff and informed me that one of the nurses had even called him from home the night before to say goodbye. Quong is really special even in a crowd of RNs and Techs who exceed expectations so consistently.
We waited for SuperShuttle and then hit our first snag - the van arrived, but it wasn't wheelchair accessible, as requested. I took one look at it and decided that it would simply have to work and we successfully maneuvered Charles into a seat. Getting out and back into the wheelchair at the airport was another feat made more complicated by the fact that the driver just would not drive to curbside and instead had us get out in the street. Nevertheless, we made it.
Checking in and security provided no special service, but we made it through. Getting on board was another challenge, as the "aisle seat" ordered didn't come until the plane was almost full and we'd been sitting at the end of the ramp for ages. When it came, again the seat transfer defied our practice sessions, as the aisle arm rest didn't raise and so Charles couldn't slide in as planned. Still, he is a graceful improviser and it worked out.
As soon as we took off, Charles got really cold. He's lost a lot of weight and the air seemed to be blowing right on him. We had a moment when I couldn't do much except wrap my vest around his head because the seatbelt sign was still on, but then the flight attendants provided "blankets" (the thickness of toilet paper) and he eventually warmed up a bit. That moment was hard though, as he got tearful. He has expressed a lot of fear about flying based on mean flight attendants he encountered many years ago after another surgery.
He sat next to a lovely, patient, nurturing man from Montana who engaged him in conversation and kept Charles' blankets on, too. (Charles and I were both in aisle seats, so I was on Charles' other side).
Getting off - another challenge, as the configuration of the seats required not a slide, but a stand and then about four steps backward. He did it though and we were off to the SF SuperShuttle. Unfortunately, that SuperShuttle only does pickups from a poorly signed "courtyard." But we found it and at least it was wheelchair accessible! I've been surprised by how difficult it is to navigate in SF in a wheelchair, since I know the advocacy has been vociferous and loud for many years, yet seems (in our limited experience) to have not be fully effective. SFO's resources don't even include a link to accessible taxi options!
The check-in at the rehab was without incident and Charles remained strong and seemed comfortable with my leaving. It may have been harder fro me to leave him! I reconstructed his "wall of love" before I left, made up of the cards and pictures he's received from so many. I think he likes the kids' drawings best and many of the great kids whom he teaches and coaches have sent great additions to the wall.
Got a ride (thanks, EB!) back to SFO, where my flight was overbooked AND delayed. A last minute miracle gave me the last seat to Denver, thank goodness. I had been standing in the airplanes's entrance foyer, eyes closed and thinking about my friend Marion and her team of friends whom I knew were praying for me all during the day, trying to channel their prayers into this very specific need that one person would take United up on their offer to give up a seat to cover their overbooking issue. When a man who had boarded long before suddenly stood up, I felt great appreciation for him and for the wonderful protective prayers of Marion and crew.
I arrived to Denver late (and temporarily confused about where I was) SuperShuttled the 45 minutes back to the hospital, and then drove the 75 minutes back to the girls, arriving just before midnight. Whew! Talked with Charles most of the way back from Denver to Colorado Springs (not illegal in CO) and he seemed upbeat still. Also got messages from friends who stopped in right away to see him, reporting on his status and frame of mind and all is good.
Now back in CO, where we will get the car checked, pack up, say grateful goodbyes, and begin the long drive back. Here was my welcoming crew when I finished this long day (they were a welcome - if sleepy - sight).
FRIDAY, AUGUST 28, 3pm
Charles is safely settled into rehab and seems happy with the care. They promise to work him hard... visitors only from 4:30-9:00pm. The journey had unexpected hurdles, but he managed like a trooper and didn't even seem tired when we arrived.
Now trying to get back to CO to get everyone else home....
THURSDAY, AUGUST 27, 7PM
Progress! Thank God, everyone who has been praying, the nurses, physical therapists, and case workers. As of tomorrow - God willing - Charles will fly to SF and check into an acute rehab facility. His focus must be on therapy and rest, but he can have visitors in the evenings (either after 4:30 or after 5:00; I'll check tomorrow to confirm).
If you have time to drop by some evening, I'm sure that he will be very grateful and thrilled to see you. For online privacy purposes, I'm not going to put the facility's name or address online, but if you might drop by, shoot me an email and I can send you the info: madtortuga@aol.com. If you aren't in town but want to send a card, also send me an email and I can send you our home address.
Tomorrow we will be praying for safe travels and continued strength and healing. We also have lots of ongoing prayers of gratitude for the successful end to this stage of his journey and for the sustained healing he's experienced thus far.
THURSDAY, AUGUST 27, 11AM
We thought we had the insurance approval for acute care, then found out it was a false alarm. Still, paperwork is in order for discharge and my backpack is full of drugs for the trip. Prayers engaged for this final step!
PT went well today. He walked about 20 (small) steps down the hallway, with a lot of coaching and support with each step, then repeated it three times. Both his stamina and his walking skills are increasing, which is great. His mood is upbeat, too, thank goodness, as the alternative is draining. Still no appetite, especially for any meat products, but he eats when I prompt him incessantly. (The girls may get what they've always wanted - a Dad who is a vegetarian like them!)
Holding our breaths and praying hard...
WEDNESDAY, AUGUST 26, 6PM
Plans to return home derailed; perhaps I was being too optimistic anyway. And as a result of waiting ages for answers, we left the hospital late and ended up in terrible traffic that meant a two-plus hour trip back. Exhausted.
Prayers, please, that Charles' insurance responds early tomorrow with approvals for him to go into acute rehab. (Delays and other options carry challenging consequences.)
WEDNESDAY, AUGUST 26, NOON
Great PT session, two days in a row. He does his seat transfers easily. He stands (with two people spotting) and walks (with difficulty and three people spotting him) ten feet at a time. Today he managed to move his bad leg voluntarily. Don't get me wrong - the whole therapy process is pure agony for him - but he perservered and made an awful lot of progress, so it was good.
He's still very emotional and really wants to go home. Soon, we think. Plans being finalized...
MONDAY, AUGUST 24, 5:30PM
A productive therapy day. Charles did multiple seat transfers, half without a sliding board, just a single pull straight across from one seat to another. He also stood several times and for a total of almost ten minutes. Very difficult, but he kept saying, "I'm going to walk to the end of the hall and back" and I think that vision kept him moving, if not quite walking. Yet.
We encountered and surmounted one more administrative hurdle; a major victory. Alleluia.
The girls were really upset when they woke up this morning and I was already gone. I got a phone call from K in tears, then another one later in the day when she couldn't find something. She's not one to cry much, so it made me sad again to see how the accumulated stress is getting to her. G texted me her disappointment that I wasn't there at about the same time, but she accidentally included a typo. "Wake us tomatoes" said the first text, then "I mean tomorrow." Of course I responded, "OK, broccoli." (Oh, I find myself so amusing - someone has to!)
Poor kids. They are both having some "sympathy pains," unexplained pains in exactly the same location as Charles' biggest aches and pains. Fortunately, theirs seem to be resolving. I feel for them and at the same time think that these subconscious reactions are pretty sweet. G broke into tears in Safeway, saying, "I miss my Dad...."
Our EM today knelt before giving us the Eucharist and, perhaps because of the solemnity of her reminder, I felt with it such a Presence of unexpected peace and reassurance. Marvelous experience, especially on a day when I was operating on only a few hours of troubled sleep. Charles was smiling angelically afterward and commented on the appropriateness of her prayer and it was great to share such a spiritual experience.
SUNDAY, AUGUST 23, 10PM
A hard day in ways that are hard to explain. We encountered possible glitches to our travel plans - more to be determined as next week begins. To clarify, he is not coming home, but (hopefully) to a rehab facility in San Francisco. I've been talking with the therapists there and a good friend who experienced the facility and will have more information soon about possible visits and phone calls but it looks like they will be limited to the lunch hour and dinner time/evening hours. If admitted, his therapy and rest schedule will occupy the majority of his "working day" and his healing will depend on avoiding the distractions that so easily derail his attention from this essential therapy.
Today was also a "valley" in terms of physical progress - he did some chair transfers as the therapist assigned, but was exhausted after just a few and not showing the stamina gains he'd shown before. But the day was hard in ways that went beyond that... the girls and I discussed the fact that we are increasingly lonely for the man that we know and love so much. He has always been intentional about making choices that allow him to be physically present for his kids on a daily basis and we miss that, we miss him. Right now, his highs seem too high, his lows too low. He groans in loud agony when he bumps his foot, making me ache for the pain he seems to feel, then has the same reaction when I rub some cool lotion on a sore knee, leaving me confused about when he is actually feeling serious pain. I don't know what to call this - it isn't memory or cognitive understanding - but it feels like part of the real Charles is still missing, but it is a subtle part and you'd have to know him well to miss it. The girls of course sense it too and we are all aching, sad and lonely for him, which is confusing because of course he is right here. The nurses, who didn't know him before, are perplexed too, never knowing when he is telling a true story and when he is on a high, making something up to entertain them. We have no name for this disconnect between the husband/father we know and the subtly-off reactions of the slowly healing husband/father before us, so it is lonely and confusing....
SATURDAY, AUGUST 22, 8AM
Nearly everything is in place for a transfer to SF next week. Fingers crossed! Acute therapy will be intense and I'm trying to prep him for that mentally and physically.
He's feeling stir crazy and very grumpy; understandable. But he is also still tearfully grateful at the cards and e-greetings that continue to arrive. Here's a partial picture of Charles in a wheelchair beneath a wall in his room:
The girls are having a rough time, too. G was eloquent yesterday, declaring that "there is no such word as happy" and resolving to "form a club, break into people's houses, and rip out the pages in dictionaries that have that word in it, because it is meaningless." I ache for her and yet am so impressed with her eloquence and ability to express her feelings. K wrote out codes that translated as, "I hate [the hospital where Charles is receiving care.]"
On the other hand, there is this, which reminds me that even the anger and frustration is fueled by love, love, love:
FRIDAY, AUGUST 21, 10AM
Difficult PT this morning, but productive. He stood three times and is now focused on learning to balance while standing. Difficult emotionally too; he's feeling very tired, both physically and, likely, mentally/emotionally. Still waiting for the final approvals to be in place to travel... we are picking up a wheelchair this afternoon (hopefully) in anticipation of needed airport transfers.
THURSDAY, AUGUST 20, 5PM
A good PT day: Charles stood and walked eight steps, with support and coaching. Improvement!
We also began resolving some of the conflicting messages we were getting from his care providers. He makes great improvement with the physical therapist, then the nursing staff, unaware of his progress, continue to do for him many of the things for him that he has re-learned to do for himself. I feel awkward telling them what to do - and of course they don't take direction from me - but I feel like without better communication his therapy gains are short lived, so I assert myself as often (and delicately) as possible.
This even happened with his doctor, who came in to see him and then reported back to the physical therapist that he was in no shape to travel because he couldn't even sit up in bed. What?! He's been sitting independently (no back support) for weeks. The physical therapist called her on this assumption, saying, "you are looking at a man who is 6'7"! He's not straight in bed because the bed isn't big enough for him!" I'm glad the misimpressions are being corrected, but a bit concerned that without diligent correction, these could be guiding decision making.
Also, I insisted today on talking with the case manager, whom I had only met once. Her impression of Charles' readiness was different from mine, which was so frustrating as her very definitive understanding was at odds with the work we'd been doing so far. Fortunately, in conversation I was able to refer her to his physical therapist, who affirmed that Charles is now, officially, plane-ready. That helped enormously: the case manager went from seeing problems to finding solutions, contacting SF-based facilities and finding a spot for him at one of the best. I then spoke for a long time to one of the SF case managers, who was very encouraging after reading Charles' file. So, as soon as we can get the last bits of paperwork in place, I can buy a wheelchair and a plane ticket and we can hop the Rockies.
Our spiritual moment came with the daily EM, who today was a lovely and funny talkative woman from Texas. She walked right in and cheerfully said, "Jesus is here!" This time I cried as we received, feeling relief from my some of my frustration and weariness in that Presence and the strength and love that comes with it.
Please pray that the final approvals will occur tomorrow!
THURSDAY, AUGUST 20, 7AM
Charles had a slow day yesterday; the hospital seems to be merely babysitting him while we wait for rehab possibilities. We're not supposed to help him - this is the job of the hospital staff, as they repeatedly tell me; I assume that there is some liability associated with this direction. However, when Charles needs something other patients have priority needs and he often has to wait a long time to get help changing his bed, getting meds, getting support to move, etc. I'm not blaming this wonderful staff; I believe that other patients do have priority needs, but still it is extremely frustrating to be stuck here in a situation when I am not supposed to do what needs to be done and when his lower priority status means that he doesn't always get the daily physical therapy he needs for his recovery.
Apparently Charles feels it, too... he got out of bed by himself after we left yesterday and fell, subsequently complaining of pain in his bad ankle due to the injury. (X-rays showed no broken bones.) The hospital setting is very caring and clearly he has expertise available to him, but at the same time the communication is incomplete, it is hard to tell in the big picture who is ultimately in charge, and the lack of control is frustratingly dehumanizing. Even for me, and I'm healthy, not the one who has been lying half dressed in a bed for nearly a month now.
Really bad evening for me last night. I'm feeling completely overwhelmed and there is not a thing anyone can do about it. Two things I'm tired of hearing, because they are both true and meaningless and are repeated a lot:
1) "Take care of yourself." What does that even mean? I often can barely breathe, can't eat, can't sleep. Charles freaks out when I leave the hospital, the girls are angry and sad when I leave them, but so angry at him and in all fairness needing a break from the hospital. There are continuously pending issues of lodging, transportation, food, bills, and life that I have to deal with and despite appreciated help from friends and family members who have given up much to be with us, the responsibility still ultimately falls to me. There's no room whatsoever for me in this situation and there's nothing to be done about it. This is life right now, I am strong, I will cope, but there is no "taking care of" me. The suggestion carries more pressure and the very concept is beyond the point.
2) "This is going to be a long journey." I know. I accept that. But to be reminded of it frequently is overwhelming, especially when I feel like I can barely make it through the day.
Things will get better. Hopefully we will get some answers soon. The process just needs to work itself through and I need to pray for patience and strength.
WEDNESDAY, AUGUST 19, 7:30AM
Hard to leave the girls this morning; both woke up and were sad. "Can't you just not go to the hospital for one day?" Oh, how I wish... soon, I hope. Charles slept well and we are looking forward to a productive therapy day. Prayers also for a firm and imminent transportation plan....
TUESDAY, AUGUST 18, 9PM
Charles stood today, getting himself up by using a stable bar. He had three of us spotting him, just in case, and leaned slightly on me once he was up, but he did it. He was also out of bed for six hours straight, without complaint or difficulty, and did his bed-to-wheelchair transfers with relative ease. I think that we are ready... now for the logistics to fall into place.
We moved out of the lovely Denver home where we'd been staying (with deep gratitude to Shera and Kris... and Andrea and Bill.) Much longer drive now and a shifted visit schedule; fingers crossed that despite it being more work (driving time), it will work for Charles and be better for the girls.
MONDAY, AUGUST 17, 9AM
Overhead (from the PT) that the doctors are "flabbergasted" by Charles' progress. A massive bleed like his shouldn't result in such improvements, so quickly, apparently. I told him that love and prayers are the reason; we are so grateful.
His goal was to sit up for five hours today and he made it - with difficulty - for five hours and 20 minutes. We counted every one of those final minutes....
SUNDAY, AUGUST 16, 8PM
No therapy on Sundays. Instead, Charles got out of bed in about 90 seconds and then into the wheelchair in one quick swoop. Plane ready? Fingers crossed... He sat up in the courtyard and then the cafeteria, completely himself, for a full three hours. Afterward, he was tired and disoriented, alternately joking with and speaking in discipline-Dad-voice to the girls.
Prayers for a plan this week for an imminent return home! And strength....
SATURDAY, AUGUST 15, 6:30PM
A great PT session, but hard. Charles began with a determination that revealed his athleticism. The therapist set ambitious goals, all focused on the skills needed to travel effectively on the airplane. The hardest part was transferring toward his weak side and while he managed to do it, it was so difficult we were both in tears by the time he finished the first one. He was in pain and I ached with sympathy. The girls, in the meantime, had fallen asleep in the room... late nights at the hospital mean late bed times followed by early mornings in order to get here in time for therapy. The combination is tiring.
Charles' foul moods continue and manifest snappishly. It is hard on me, so I know it is harder on the girls - it seems like he is his normal, happy-Dad self, then suddenly he says something harsh. It is the stroke talking, but it still stings. The girls and I have a new plan for taking care of each other through such grumpiness: 'ice cream' is the code word for a plan for a special treat of some sort following our visit. It seems to help, but I know it is still hard on them. (And on him, of course. Nothing about this is straightforward or easy.)
We had a quick trip to Manitou today and got to congratulate my Mom on her 28th completion of the Pikes Peak ascent. She got an award in her age group and was off first place by only six minutes. Pretty awesome for an 8,000+ foot climb over 13 miles. Charles says we are all training with her next year, which sounds like a great plan to me... now we have to convince Ernestine. :-)
FRIDAY, AUGUST 14, 5PM
FRIDAY, AUGUST 14, 8:30AM
Last night was hard; Charles was irritated with the girls, who were actually trying really hard to be good. K was just sitting, but merely rustling in her seat irritated him and he snapped at me, "how would you like it if you were sick and everyone were making so much noise." The kids are still kids and felt unfairly yelled at by Dad. I tried to explain that his brain is healing and the irritation is part of it, but K was so upset that she had a hard time sleeping, which meant of course that I was up with her too.
Puck wanted attention in the wee hours of the morning (thankfully communicating his need to go out), so my night was short. Charles apparently had his own rough night, despite medication. When we arrived he was more sound asleep than I've seen him in the time we've been here and Ernestine and I settled quietly in next to him to wait for him to wake. He knew the specifics of where he was when he woke, which is good, and with some prompting the year, too. And during neuro rounds, he got a "grounds pass" to wheel himself outside during therapy. He's been inside for over three weeks now and gave a happy "thumbs up" when he heard, excited about getting some "Rocky Mountain air."
Praying today for improved mobility and decreased agitation and aiming for some fun for the girls, too....
THURSDAY, AUGUST 13, 10AM
Charles stood (with a lift) for 15 minutes today, a significant improvement from two minutes (max) yesterday (and yesterday he only stood that long because after getting him up, it took a bit for the physical therapist to get a nurse in to help get him back down). Today he again got to the edge of the bed and then into a wheelchair by himself. His motivation is "on" and his focus seems significantly better. He is completely worn out after an hour of therapy, but is sitting up in the wheelchair for another two hours to "train" for the trip back home and wheeled himself around the floor quite a bit. Seeing his exhaustion, I understand why we can't quite get him home yet... but seeing his progress I am optimistic that it will be very soon.
Plans slowly coming together for that. He needs a bit more independent mobility, but is making strong progress. Soon! Please continue to pray for additional strength and mobility...
WEDNESDAY, AUGUST 12, 8:45AM
Good therapy session again. He got out of bed independently and in one strong movement (after a lot of encouragement and reminders to focus) and then, with the help of a lift, stood for several minutes, which took effort from both legs. It felt so amazing to see him standing up! His kick was stronger yet today in his bad leg... so fantastic to see improvement. And he joked with the neuro physicians on rounds while simultaneously complimenting them, the staff, the hospital....
The best part of the therapy was that today, for the first time, he initiated a lot of the exercises, said that he wanted more (despite being tired), and suggested trying new things with the therapist, i.e. "how about if you hold my sock and I try to hold my leg up as long as possible." Two or three times she had to tell him that that was enough, that she didn't want him to get worn out, and that's a big change, since up until now she (and the girls and I) have been hounding him to do more while he pleads exhaustion or tries to joke his way out of the work. I love this new self-determination.
The many people who are praying are working really hard for Charles; we so appreciate those prayers and know how much work and intentionality it takes to really pray and pray well. This continues to be a challenging journey in many ways and we are acutely aware that these prayers are sustaining us. Our prayer now is for mobility and a transportation plan that can be effected very soon. This directly relates to our morning therapy, so we especially appreciate our 7AM PST prayer warriors!
Thank you!
TUESDAY, AUGUST 11, 9:30PM
A day as awesome as the previous day was exhausting. Of course, awesome is exhausting too...
When we arrived at his room, the EM was there and we immediately joined hands around his bed to pray the Our Father. Charles received the Eucharist and then got upset that we didn't too (I think that EMs typically carry enough for the patients, not their families). His concern was touching, as was the time together in prayer.
Then, in therapy, Charles GOT HIMSELF OUT OF BED. Yes, no help, to the edge of the bed. It was slow and he still has focus issues, but he did it. Then the therapist helped him to get into a wheelchair and he finished his therapy from the chair, worn out, but a champion. His left (bad) leg moved significantly the day before, but now not only kicked, but moved in an arc about four inches off of the ground - wahoo! OT and Speech Therapy also work with him daily, the latter for cognitive healing (his actual speech is fine), which is improving every day, too.
We had a really wonderful trip to Manitou and a fabulous party with kind family who donated their time, care, children, and a mountain of gifts. Cake and pizza, too. A birthday away from home and in these circumstances is hard, but they moved mountains to make it special and wonderful. The eight dogs helped, too... a river of happy moving bodies.
While we were gone, Charles apparently decided that he was fully capable of taking a walk and attempted to get out of bed by himself again. Fortunately, from an injury perspective, he has an alarm on the bed and was "arrested" quickly and returned safely. I'm glad he wasn't hurt, but I love his determination - I think it bodes well for future healing.
We picked up Charles' mail and some for us too and when we returned to the hospital created a wall of happiness for Charles out of the cards, pictures, letters, notes, and Mass intentions. How incredibly wonderful! Charles' friend Pete was in town for business and visited again, which made Charles' day.
Good news on the projected schedule for returning home, too. He needs more capabilities before he can travel, but is making good progress in that direction, so we are able to begin talking about choosing a rehab facility near home. At neuro rounds, the doctors all said that his improvement has been far beyond what they ever projected and I was told definitively, "he will walk again."
Excellent day, all around, thanks to your prayers and support. Eternal gratitude!
MONDAY, AUGUST 10, 10PM
REALLY hard day, ups and downs.
UP: His physical therapy went really well and the therapist got all of us involved. I got to sit next to Charles to remind him to sit up straight by remaining shoulder-to-shoulder with me. G passed him cones, which he then had to pass to me, retaining his balance while sitting up. K's job at first was to whack him with a ball when he lost focus (!), then she rolled the ball to him to kick with his bad leg... and he moved it! (In the meantime, Ernestine took over the whacking :-) That was the biggest news - significant movement of his leg, moving forward about four inches at a time.
DOWN: Charles was pretty agitated and confused this day. He called early, when we were just rushing out to the hospital, convinced that he'd been driving around all night and relieved that he hadn't hit anyone. He kept saying, "I just left the car somewhere and jumped into a bed. How are you going to find the car?" He was shocked at the idea that this was a dream of some sort; I think he was confused by the different venue after all of these weeks.
Also, Charles needs are increasingly at odds with the girls' needs and I'm in the middle. I was near tears all day and in them part of the day. If I left the room to return a call, they raced after me saying that he was yelling for me. But then, when we did leave, the girls hollered a great deal because they are so worn out with going to the hospital. Horrible things were said (not by me, thank goodness) and then apologized for. Without being unnecessarily dramatic, I felt overwhelmed with anxiety. Fortunately, we just kept moving, getting through the day. When the girls finally fell asleep, I sat on the floor next to them, completely drained.
Charles is also feeling down, increasingly aware of his limitations. I think that that shows his improvement and hopefully his frustration will translate into hard work on improvement, but I feel for him. It is both mental and physical - he's more aware when he doesn't make sense, more aware of the aches in his body from not moving much for nearly three weeks. It's hard and hard to know when to reassure and when to push. I have had enough of the morbid last words, though. When he started that again this day, tearfully grabbing K and beginning the words of wisdom that signal his last goodbyes, I practically jumped on him, telling him that we'd had enough of that, that he was going to live for a long time, and that he needed to remember that he is their Dad, that they need him to act reassuringly, not dramatically. It is hard to know whether to reassure him or to try to snap him out of his moods, but the girls needed to hear that, even if he did object, complaining, "stop yelling at me!" Sigh...
SUNDAY, AUGUST 9, 8PM
Finally out of Critical Care! We hummed the graduation song as we followed his bed to the neuro ward. We had hoped to make this move a full week ago, so it was with quite a bit of relief that we finally settled into this next step after days and days on a waiting list.
SATURDAY, AUGUST 8, 7:45PM.
Great day. He seems himself and is relaxed and happy, looking forward to going home. All is good...
Our thanks to those who have asked, but we have no material needs at this time. Your prayers have brought us far and we are grateful.
SATURDAY, AUGUST 8, 10AM
He called at 2AM, missing us. I tried to calm him down with soothing expressions of love from my end while the nurses gave him some sleeping meds at their end.
We went over early in the morning to find him well, but emotional again. I had arranged for him to receive the Eucharist and when the EM came in, he began crying again as he received, as did I. It was very moving to receive together as a family and to pray together too.
Still in Critical Care, but scheduled to be moved out as soon as there is room on another floor, perhaps later this afternoon.
FRIDAY, AUGUST 7, 8PM
A much better day. The drain came out! We were there for it and watched the stitches coming out, then five inches of drain come out of his head, then two more stitches to seal him up again. He is scheduled to be moved out of Critical Care this evening and with that move comes much expert opinion that rapid improvement should follow as he gets more therapy and more sleep.
His mood was improved too and less dramatically erratic, though still somewhat so as he went from being emotional to shouting. Unlike yesterday, he did quickly apologize for the latter. I finally got to meet the neurosurgeon I had talked with en route to Denver and he was very helpful, answering Charles' questions about long-term care (no need for a neuro surgeon any more) and mine about his mood swings (totally to be expected). I was also concerned that his "peaks" and "valleys" don't seem to be linear, but more circular, as his cognitive awareness seems to take two steps forward and then one step back He said that that is also normal, that it is important to look at the bigger picture. I had guessed this, but it was good to hear.
He seemed optimistic that our anticipated return home might not be too far off. Hurrah! I'd almost always rather be on the road, but not this time... We are all eager to make progress toward having the four of us together under one roof again, learning to support each other as we adjust to our new normal. Fingers crossed that we can begin that soon.
Thank you for the prayers (and thanks, Danyell, for the visit!)
THURSDAY, AUGUST 6, 9PM
Several good friends have shared stories of loved ones and their journeys to recovery after a stroke at a similar age to Charles. These have been so helpful, giving specifics and thus understanding to the medical professionals' more generalized, "this is normal" reassurances. Our friend Karen told me that "she never knew what Mom she was going to get" when her mother was in her recovery process. Today we saw what she meant.
During the morning visit and continuing to Danyell and Ernestine's afternoon visit, Charles was mean. Mean! Beyond grumpy: he used a sharp tone that several times almost made me cry. He was directive. He asked questions about past irritations and followed up with hopes that I had responded to individuals about those issues equally sharply. This was such a sudden and sharp contrast to his lovey-dovey-ness of the night before (and, indeed, the last two weeks) that it was pretty startling.
By our early evening visit, he wasn't mean anymore, but was back to being agitated and talkative, making sense only partially. His language is normal and clear, but he refers to conversations that didn't take place and expectations about activities that can't possibly be planned. He was no longer mean (thank goodness, the girls were there), but he was loud in his complaints about physical discomfort and particularly and repetitively vocal about bodily functions that usually aren't discussed in polite company.
Then he took a nap and when he woke up just ten minutes later we had Charles #3: mellow, smiling, relaxed, all but singing "kumbaya." This is good... his BP was up again and he needed to relax, but the suddenness of each of these transitions was discombobulating, to say the least. It is as if the normal range of emotions that we each usually feel that are filtered by our understanding of what is acceptable behavior when interacting with others are intensified into one emotion at a time, without the filter.
The brain drain is still in. They had told me it would come out by afternoon, but made a decision sometime during the afternoon to do it tomorrow, which I found out about when I inquired why it was still in. I really wish that someone would take responsibility for keeping me informed. This need isn't just for my peace of mind, but relates to the need for some consistency with his care, as the nurse's idea of his "baseline" tends to be informed only by his or her experience of Charles for the last two-three days. But my complaints are probably driven by my weariness and don't undermine our gratitude for the overall quality of marvelous care.
Thank you for the prayers. This new stage means that he is progressing... and it looks like we'll all need the strength of continued prayer to get through it.
THURSDAY, AUGUST 6, 8:45AM
I got to the hospital as soon as visiting hours began and he wasn't in his room, which scared me, but he was just off getting a cat scan. Waiting now for results. He seems uncomfortable, which is nothing new, and irritated, which is understandable; he also knows where he is, which is new (if less exotic than our South American destinations).
Last night was awful. His BP spiked higher than it ever has and medication wasn't helping. He seemed to know that something was wrong and said goodbye to each of us. It was agonizing, even knowing that the medical staff wasn't as convinced of his imminent demise, to wonder if he knew something they didn't and to look into his eyes, knowing that he was certain (though wrong) that this was the last time.
He told the girls to take care of me and one another. He told them not to "take crap" from anyone. He told me that I was the best thing that ever happened to me and that I "was the best wife ever." When I corrected him, telling him that I AM the best wife ever, he showed a spark of his less dramatic self, saying "are you correcting my tenses now?" (In this context, definitely, yes!) He asked his mom if she was ready to lose him.
I've never felt so drained. No adrenaline left, just sheer heaviness. I couldn't sleep afterward, just lay awake with the girls. When I did finally sleep, I dreamed of other people dying and then of Aunt Lindy's presence.
This morning he seems fine. Neuro doctor just came in and said that they are likely to remove the drain today, which is a huge step in the right direction. Progress, thanks be to God, with hope for more to come.
(Happy Anniversary to Mom and Dad (49) and Mike and Terry (35!)
WEDNESDAY, AUGUST 5, NOON
They finally decided to clamp his drain today and will give it 24 hours to see what happens; our hope (and prayer) is that they can remove the drain, which will create more options for mobility and rehab.
Praying for that today!
Otherwise, he is doing well, slowly improving with cognitive understanding, endurance, and mobility. Teensy wiggles of his left toes, almost imperceptible, but any movement at all gives the therapists something to work with.
The neuro RN asked Charles about his cognitive understanding and he reported that he is completely normal. That said, when I asked, he still reported that we were in Venezuela. He is resisting Denver, for some reason, even specifically saying, "I know I'm not in Denver anymore."
Still, progress and the hope of more. He's got aches and pains, mostly from being in bed too long, I think. His appetite is low, but again I think that's because he's drinking high calorie protein drinks and isn't moving enough to burn any calories. His cardiogram showed no heart problems and his sonogram showed that the clot in his calf is stable.
Prayers that by tomorrow we won't need that drain anymore!
TUESDAY, AUGUST 4, 12:30
OT came in and got him to sit up again and he did so with much less effort, including sitting on his own. He even stood - with assistance - for a few moments.
His confusion comes and goes. Today we began in Santiago, Chile and now we are back in Venezuela. Maybe his Spanish will come back...
TUESDAY, AUGUST 4, 10:30AM
No PT today; he complained of chest pains, so they suspended therapy, did an EKG, and are waiting for results. At rounds, they said that they neurologists decided that since his brain is still draining, they will wait a few more days before removing the drain. He had another CAT scan also this morning.
I'm impatient, but a nurse practitioner assured me that getting home by the end of the month is still realistic. I'm hanging on to that.
Praying for all of these things....
MONDAY, AUGUST 3, 8PM
I left the hospital feeling especially tired and frustrated. They haven't taken out his drain and I don't know why. When I asked, the particular nurse on duty wasn't sure and none of the neuro team was around to answer any questions. She did say - news to me - that they are considering surgery now. That seems intimidating, but I am most disappointed to be veering from our target of getting him out of critical care soon. We are at least two days away from that at any given point that they haven't taken the drain out, which postpones my hope that we would have a rehab plan in place by the end of the week. I'm tired of being in a holding pattern, with therapy (excellent though it is) just once a day. I am impatient for results (however I've been warned to expect both peaks and valleys).
I think that Charles is feeling some of that, too. He stared without questions as she explained the possibilities and I imagine it must have felt overwhelming to him. He was tearfully emotional (which the girls assert that he will vociferously deny when he recovers) when my brother and his sister separately arrived for much appreciated visits. And he asks more frequently to get up and go home.
Hoping and praying for more progress tomorrow...
MONDAY, AUGUST 3, 1PM
Charles did a good job sitting up yesterday and today on the edge of the bed. Took a lot of work to stay balanced, but he improved a lot today even just from yesterday and today he did it for longer and with a lot of silliness. Nice to see his sense of humor, except that it distracts him from what he needs to do. I warned him again that if he doesn't focus, I'll bring G with me - she would be very good at telling him what to do in a voice/tone he wouldn't want to mess with. :-)
Today the Physical Therapist went one further and got him lifted into a chair, so that when the medical staff came around for rounds, he was sitting there listening. (Sort of. He was exhausted at this point and beginning to fade.) No word yet on when they will remove the head drain... we are waiting to hear from the neuro surgeon, but missed him this morning.
His cognitive reactions are also improving. The speech therapists ask him a series of math problems to see when his focus fades. On Friday he faded after five questions; today it took seven until his answers slowed down. I read a book called, "Smarter" just before we left home and I wonder now if some of the IQ-boosting exercises presented in that might help - will review it again.
He is still emotional, telling his Mom tearfully, "I wanted to do more for you." I reminded him of what he said about our girls a few days ago, that he just wants them to grow up to be responsible, kind, good people and that that's what his mom wants for him, not anything money can buy. He then told me that I was the best wife in the world. Good to hear, even in the circumstances... :-)
The girls are emotional too, thought they are reacting differently. Yesterday we found a nice Mass with a great homilist (Our Lady of Lourdes parish) who spoke about the Eucharist and the centrality of it. G even looked up at me during it and said, "this is WAY better than our church" (where we have ongoing complaints about the general lack of enthusiasm for any element of faith). However, both girls had been reluctant to go in, expressing a lot of anger at God for "letting this happen." I was glad to see them express their anger and glad to see it expressed as anger at God, not disbelief, but I'm sorry I'm not able to make this whole ordeal easier for them. G in particular has been very enraged, finally telling Charles yesterday, "we don't do anything except talk about you. I'm the kid. You should be thinking about ME!" While this sounds rotten, it also struck me as a normal and very honest reaction, probably close to what we are all feeling on some level. I've always admired her ability to understand herself and express herself appropriately. K has been a champion, just a little more affectionate than usual and teasing her sister a little less, both of which are helpful.
Prayers are working. Still hoping for a plan to get us back home and Charles in rehab there. So this week we are praying for the safe and permanent removal of his head drain, for a move from Critical Care, and for a speedy solution to get us all home soon.
Our friend of a friend of a friend who loaned us her lovely home while she was on vacation returns tonight, so after leaving the hospital we cleaned and moved out (with eternal appreciation for Kelly... and Cynthia, who connected us). We are now camped at another lovely Denver home - generous friends of wonderful friends who left this morning on vacation. So our prayers are also prayers of gratitude for such good, kind, generous people... and for Charles' continued improvement.
SATURDAY, AUGUST 1, 9PM
An interesting day. Charles looks great. He sounds like himself. He had an hour of PT this morning and was exhausted, but did decently with it.
We're starting to settle into a routine in which we visit the hospital, arriving for therapy and rounds, then go have an adventure with the girls, then return to the hospital. As with all routines, this one is flawed by my lack of discipline: I mean to make the hospital trip short, but have a hard time pulling away, which means that the girls are getting a bit frustrated and bored. But I'm improving...
Today we ventured as far as Manitou Springs, which should be a long hour, but which was made longer by bad traffic. We had a great visit, but 45 minutes from the hospital they called and put Charles on the line. He wanted us to hurry up and get there, his conversation torn between stroke-recovery Charles, who is pretty needy, and Dad/Husband Charles, who cautioned us in the next breath to drive carefully.
When we got there, he was fine and didn't seem to remember the phone call. He asks the same questions repeatedly and is still confused about where we are, thinking that we are in Venezuela or Brazil together. He literally will ask about someone, i.e. "Where did Keith go" and when we tell him, "Keith is in Las Vegas" he'll say, "really? I thought he was right here." It is weird and a bit exhausting to have repeated conversations and to feel like none of them are grounded in reality. In addition to asking about our South American destination, he again assumes that we are camping or hiking and asked once, "how far will we hike tomorrow?" I so wish I could give him the answer I'd most prefer... he didn't even remember when he said that that half of his body in mostly immobile right now.
But he's getting better, this is normal, and we're hanging in there. I do hate leaving him at the end of the evening, though. He seems so alone in his disorientation.
FRIDAY, JULY 31, 9AM:
Just saw his neurologist, who said that the plan... if all goes well... is to remove the drain Sunday and then, if his catscan is clear on Monday, move him out of Critical Care. Best, he said that they will then begin working on a rehab and transportation plan, so we could know more about when we can go home by the end of next week.
Hurrah! Working toward goals helps!
He is emotional this morning, but knows where he is. For some reason, he's obsessed with making sure that we all go horseback riding somewhere. (That doesn't interest me at all!) He's also talking about seeing people who haven't been here, but he is happy with the false memories and the neurologist said that as long as he is happy, they aren't worried about the false memories, that it is all part of the brain's healing process.
Thanks for the continued prayers!
THURSDAY, JULY 30, NOON:
He woke up early (3AM) asking for me, but though I've told them that they can call, they kindly opted to talk him out of it instead. He's been up since then and so is tired, but had a good physical therapy session. I helped and it was good to feel useful. His left arm is getting more motion, but he doesn't have much in his left leg. Yet.
I massaged his feet and trimmed his toenails and Tony helped him to shave. Plus I retrieved his glasses from the car. So now he looks less like a camper and more like the young handsome man he usually presents.
The feeding tube is coming out - hip, hip, hurray! Food today is going to veer back toward vegetarianism, since he complained so much of his stomach after eating it three meals in a row yesterday. "I don't need meat again for ten years!" was, I believe, his exact quote. His vegetarian wife and kids are quietly high-fiving one another. :-).
BP currently down. No pain now. And it was good to see him sitting up with his legs on the floor during therapy. Except for the hospital gown, the cords running from his body, and the three therapists surrounding him, he looked almost normal. His voice sometimes sounds normal, too, which is nice, though he chooses to sign during therapy, saying that he needs to focus. Whatever works.... He still seems mostly confused and disoriented. He told the physical therapist that she was a Slytherin, which she accepted with a smile, though her assistant objected, saying "nope, I'm Griffendor." (Harry Potter references.)
I didn't hear his nurses do an orientation check this morning, so I did one myself:
What's your name? "Virgil."
What's my name? "Spitfire."
Where are we? "I can't stand to hear that question one more time."
I *think* he was joking on the first two and serious about the third. More hope, I think.
WEDNESDAY, JULY 29, 3PM:
Charles seems more confused today and still a bit melancholy. The neurologist said that the confusion is normal. He wasn't in the mood for more phone calls.
He got very emotional, saying lovely loving things to me that I never hear enough. He spoke about our girls, (who were at the zoo), saying that what he wants most for them is that they grow up to be nice, responsible, loving people who make the world a better place. (They do that already, but I know what he means).
His therapy went well and he demonstrated more use of his left hand today. No movement in his left foot, though. The cat scan came back "stable," which is another way of saying that he still has too much blood on his brain and the drain needs to stay in. Unfortunately, that's also another way of saying that he has to remain in the Critical Care unit. Oh well, they said that it usually takes one to three weeks and we've "only" been here one, so we're still within expected improvement norms.
I saw this on a bumpersticker as I parked this afternoon and think it might be a new family motto: "Life isn't about waiting for the storm to pass... it's about learning to dance in the rain." We're dancing, all right. Worn out and worried, but doing our best to celebrate the peaks and keep moving through the valleys.
TUESDAY, JULY 28, 8PM:
Charles was awake and making jokes again this evening, doing some of his physical and mental exercises even without the therapist present. He ate a full dinner - chicken fried steak, which happily reminded him of a line from one of his favorite television shows in which the character complains that "meat shoudn't be used as an adjective!" He even made a few phone calls, including leaving a message for his uncle and aunt in Pennsylvania, talking with his aunt and uncle in Virginia, and calling his friend Pete in California. His speech is good and at times even normal, but sometimes he pauses as if to wait to remember what to say next and his wit didn't always translate over the phone. I love that he is trying to be lighthearted, though, attempting to reassure those with whom he was speaking (especially when, ahem! someone started crying at the very sound of his voice :-). He has said repeatedly that he doesn't want people worrying about him.
He still seems to have a lot of false memories, saying things like, "when we saw so-and-so yesterday..." even though he hadn't and he volunteers information that normal social filters would not usually permit. He asked about his grandfather again and when his Mom reminded him that Charles had been there when he passed, he looked away sadly and said, "I know that." When I immediately reassured him that he was getting better every day, but that I knew forgetting must be hard for now, he looked alarmed and said, "what have I forgotten? You have to tell me...." A reminder to myself not to dwell, even reassuringly, but to correct and move on.
As a Dad, he is still his protective self, asking what the girls are doing to have fun. When I told him that they'd been swimming at a recreation center we discovered, he got concerned, saying, "you know that my mother can't swim if they need help!" Then I reassured him that I had been there too and that I'd kept my eyes on them carefully because I noticed that the lifeguards weren't watching them at all. He nodded approvingly, still oriented toward care and love of our girls.
He enjoyed the cards that he got yesterday, especially the homemade one from some of the kids in one of the science class he teaches (thanks, Angela and Aiden) and laughed with appreciation at the video the R&B clan sent us, telling us, "this is a song just for me. I'll bet no one has ever done that for you!" (The girls loved it too - watching it was the happiest I've seen them since this started. Thanks!)
I've posted an address below (under Monday's news) for cards, for those who have asked where to send them. If you'd like to chat with him, please do NOT call the hospital - they are a bit wary now of the number of people who have called claiming to be one of Charles' siblings. Shoot Ernestine or I an email with a phone number and we'll see what we can do. (Mine: madtortuga@aol.com).
Your prayers are working; thank you so much!
TUESDAY, JULY 28, 2PM:
Movement in left hand and arm; very little, but definitely there. A positive! Cognitively, he seems almost completely like himself, including his voice. But he's got head pain again and so has been sleeping a lot due to the pain meds; that makes him seem less Charles-like, as he has been groggy and slow to respond this morning. He's also a bit confused as to time/date sometimes; for example, he was certain that we should be able to watch the All-Star games on TV. He knew that they are always the same week as his birthday, but forgot that two weeks had passed since then.
In a more wakeful moment, he asked when he could go home. He also asked clearly for "the plan for today," telling me that he wants to know "what to look forward to and what to dread." I put the therapy on the "look forward to" side and the fact that he is still here and uncomfortable in the "dread" category. Meals might also go into the look forward to category - he ate a whole plate of pancakes and vegetarian sausages this morning, so we will try to tempt him with dinner options...
MONDAY, JULY 27, 9PM:
A groggy evening for Charles; they gave him pain medication, so he didn't seem much aware of our attempt to have another family dinner. On the positive side, when they woke him, he passed the orientation test groggily, but with flying colors: he knew the year, the city and state we are in, and his full name. Hurrah!
A rough day for the girls. We found a neighborhood recreation center so that they could go swimming, which was good, but they are grouchy and tired and probably scared and angry, too and all of that seems to be catching up. Teasing, tantrums, and unreasonable requests, especially from G. They need some quiet and some rest; fortunately, they have finally fallen asleep. After navigating their emotions all day, I'm worn out but too wired to sleep...
The morning was a peak; the afternoon/evening definitely a valley. Hopefully we are headed up again tomorrow; fingers crossed.
Thanks again for all of the prayers.
MONDAY, JULY 27, NOON:
Peaks: He wiggled his left finger! He pushed with his left leg! He showed some resistance with his left arm!
Still waiting for the BP to lower and the brain scan to clear; there are two spots within the brain that still need to drain.
They also did cognitive tests and showed that Charles is, well, basically... (ahem) still a lot smarter than me. Able to subtract, add, multiply. Some stumbling while answering, but then he got the correct answers. When asked where he was early in the day, he thought he might be in northern England, but later knew enough to answer some orientation questions with humor and love:
Are you married? "Happily."
Do you have any kids? "The two very best."
How long have you been married? "Not long enough."
He's also fighting nausea this morning, but the therapists had him work through it. He seems exhausted, but he's fighting and knows he's seen some triumphs today, so that's good.
Thank you for the ongoing prayers!
SUNDAY, July 26, 8PM:
We leave the hospital every day in the mid-afternoon when their shifts change and visiting hours are suspended. The girls and I were getting our shoes on to go back for evening hours when the hospital called. That's always a heart-stopping number to see, but the nurse on duty simply wanted to tell us that Charles had been given his dinner, but was declining to eat it until his wife and kids arrived. Joy! We rushed over with our own dinner snacks and sat down together for a Sunday evening family dinner, complete with prayers of gratitude, of which we have many. Charles didn't eat much, but he ate something and that's progress.
He's not complaining as much anymore; his headache seems gone, thank goodness. Blood pressure remains high, but about ten points lower than that which the nurse had been so worried about last night. They predict that it may take a few more days to normalize at a lower rate.
Leaving the hospital tonight, the nurse on duty reported triumphantly that Charles responded correctly to each of her wellness questions, the first time he'd been able to thus far. (Earlier in the day he had told us it was 1991.) She said, "he is obviously extremely intelligent. Last night, when I asked if he knew where he was, he started naming constellations I had barely heard of!" Today, after dinner, he asked to share grammar jokes and we progressed from there to science jokes, even some new ones that the kids hadn't come across when prepping for their TV show earlier this summer. It is interesting to see his brain at work, healing... some of the wittier jokes he got before anyone else, whereas others caused him to make comments that appeared to be off-topic or on a tangent. But in either case, he is speaking more and more clearly and it is wonderful to hear his voice.
In addition to improvements (I so like peaks more than valleys), we are grateful today for visits from Charles' brother Tony; my cousin Chris, his wife Tina, and their kids; and my cousin Michael with his wife Kim and kids.
The prayers are working; thank you so much!
SUNDAY, JULY 26, NOON:
Physical therapy started AND he ate his first solids - a few bites of cantaloupe. Two big milestones. The therapy seemed pretty productive: he was a bit confused about the day of the week (but then, so am I) and the year, but knew other things and responded appropriately to many questions. He demonstrated limited to no use of his left side, including the vision in his left eye. He seems exhausted, not surprisingly, and still emotional, expressing concerns about "how long he has left." We reassured him, with supporting medical backup, that there is no reason he shouldn't live longer than his own grandparents (90s and counting).
I was present for rounds and our "dismal doctor" admitted again and with more feeling that he has been very happily surprised by Charles' progress. It was a relief to see Charles sitting up, even though doing so clearly took effort.
Progress is good! It is still so very strange to be counting thankfully for small graces such as swallowing when a week ago today he was fully healthy and the four of us were exploring the incredible beauty of Zion National Park together. We saw the most awesome mountain goat when we entered the park this time last week; I'll try to post that photo soon as a symbol of resilience, strength, and grace, all of which Charles has been demonstrating so well.
He feels your many prayers, and so do we. Thank you!
SATURDAY, JULY 25, 6PM:
Peak: He passed the speech therapist's swallow test and can now eat! So far, a few sips of juice and those made him nauseous, but it is progress.
Valley: His blood pressure is spiking so much that he's maxed out on the meds they can give him and the medical staff are concerned. So now we are keeping things quiet and praying...
SATURDAY, JULY 25, 2PM:
He is awake more today. Blood pressure remains high and he seems more uncomfortable from the headache, stomach; he is even complaining about his knee. He says that he is hungry and thirsty, too, but he can't eat because they don't think he can swallow. He has no feeling on the left side of his body.
I don't know how to describe his waking time. He knows who we are and asks about other people, but is also forgetful, asking repeatedly for his mom, though she is right there. He also expresses repeated surprise that we are in Colorado and once asked how his grandfather is, though he died nine years ago. Outside of his immediate family, the other person whom he asked about was Father Steve, our friend who celebrated our wedding with/for us.
He is using his limited sign language a lot, which is hard to follow because he knows the ASL alphabet better than do I. He continues to use Spanish phrases, which amuses the girls since he rarely did so before.
He responds best/most Charles-like when the girls are around, joking with them and accusing me of being a "bad mom" because I haven't bought them any ice cream since we've been here (I got them some since, promise!) That said, he "reminded" them of an event that he believes happened yesterday and to the three of us sounds more like a bad dream or a television episode. When they couldn't remember (because it couldn't have happened) he got upset, saying "You think I am crazy." Another time he said tearfully, "there was so much I wanted to do with my life." That was hard to hear. On the positive/humorous end, when I left to use the restroom, he told the nurse, "she left me for Johnny Cash."
I'm starting to look up stroke recovery details so that we have a better sense about what to expect. I feel both flummoxed and then, when I get a chance to reflect, not terribly surprised. His reactions cross the gamut of emotions, which is reasonable. Most of what I have read thus far confirms what the medical staff have said, that each case is different, recovery is rocky and lengthy, and each day has to be taken one at a time.
We are missing family terribly today, so sad that we aren't at Tori and Corey's wedding, which we had planned this trip around. Charles has said repeatedly, "please don't leave me," so the girls and I are agreed that we made the right choice not to go, but we're sad nonetheless to miss both the celebration and the chance to see family whom we don't see often enough. Our best wishes to the bride and groom for a wonderful celebration and a lifetime of love! Love you...
SATURDAY, JULY 25, 6AM:
Yesterday was a hopeful day all around. During morning visiting hours, he woke up for about 20 minutes and asked about the girls. When I told him that they were at the aquarium and showed him a picture of them that my mom had just texted me, he took the phone and kissed it. He also asked about his siblings and nephew, then gesturing a request to have his teeth brushed and his face washed.
During the evening visiting hours, he woke up for a slightly longer period. The girls were in the waiting room and he asked for them right away, mumbling specifically to "sneak G in." (She's underage for admission to critical care.) When they were both there, he bragged about them to his mom, told K that she should play baseball with his mom, bragging about his mom's skill and softball nickname, and otherwise was very specific, very loving, very happy to see everyone. His voice is often hard to understand, he gestures instead of speaking at times, and he uses very short phrases when he does talk. He has a sense of humor, too, telling me at one point that if Colorado has any fires, he could put them out (when he had to pee); another time, when his Mom and I told him that we loved him, he responded in typical Charles way, "I love me too."
Practically, it was a miraculously hopeful day, too. Our friend Cynthia found a friend of a friend who was going on vacation for a week and offered her house to us - it is about six minutes from the hospital, even closer than the hotel. This wonderful stranger told us that even when she returns, she can stay with a friend and we can continue to live in her house - an offer that I couldn't possibly take her up on, but the mere offer made me feel blessed beyond words. Later, we had two other offers from friends with friends who were in the Denver area, going on vacation, and willing to open their homes for the next week. People are good and we are awed by the care and concern that manifested in such quick practical solutions. Thank you.
We are deeply grateful for the shared stories of stroke recovery, the practical recommendations for fun things to do in the Denver area (dinosaur tracks!), and the prayers, the prayers, the prayers. Charles told us last night just before visiting hours ended that he can feel the prayers.
Thank you.
FRIDAY, JULY 24, 11AM:
Charles is still sleeping, but wakes for a few moments every half hour or so. When he does, he indicates discomfort with his feeding tube and headache, expresses momentary recognition and interest, then settled back to sleep. His grip is still strong in his right arm.
Puck is with my Dad and his sister Ahwahnee, having fun I am sure. The girls are on a field trip with my Mom to a local museum and are also having fun. They were bickering and being mildly obstinate this morning, so that felt like a welcome return to normal.
The doctor told me this morning that Charles is doing better than he had expected. (This is the same doctor who told me initially that there was a good chance Charles would not make it, so coming from him this is very good news.) He is on new blood pressure medication and is responding, so fewer alarms are going off in the room, also good news. They have him on a new, experimental medicine to break up the blood clots in his brain - the bleeding stopped, but the accumulated blood doesn't seem to be decreasing, despite the amount we can see is draining out. This also looks hopeful.
Last night was our first good night's sleep in three days and even thought I woke up every 90 minutes or so in a panic, it was a great relief to sleep and to see the girls doing so as well.
Funny story: they began feeding him through a tube yesterday (and will move him to a stomach tube soon), but before they did, it had been some time since he had eaten. One of the things he said in the middle of the agitated night was, "yo tengo hambre!" Now our wild hopes include the possibility that a stroke can stimulate your language learning abilities, since I didn't know that he knew any Spanish at all. Hee, hee...
Laughter helps, and so do prayers. Thank you for so many of those....
FRIDAY, JULY 24, 8AM:
Yesterday was noneventful; Charles must have been exhausted from being agitated and awake so much the night before as he slept all day. The ICU nurse said that this is to be expected.
I know that it is good for his healing, but it also felt like one of the emotional "valleys" that the nurse described to me when we first arrived at the ICU - to see no visible improvement all day and to have such limited responses to us. He opened his eyes a few time, squeezed our hands lightly, wiggled his toes, whispered a few words about his discomforts, and then went back to sleep.
We contacted the local Catholic chaplain, who met us in Charles' room to celebrate the Sacrament of the Anointment of the Sick. That was comforting, if also hard. I'm glad that the name of the Sacrament was changed, but it still felt momentous. Glad that the girls don't know/feel that history.
We very much appreciate everyone's prayers and the stories of other loved ones who have experienced this and fully recovered. Really, that means that world.
Other wild needs:
1. Our wild hope right now is to find a cheap (free?) place to stay close to the hospital that is family and pet friendly. The hospital has one possibility and are checking if it is open - fingers crossed. Our hotel is great, but we can't stay here long term. Our second option isn't bad... to stay with family who are about 75 minutes away (love you Aunt Terry, and thank you). Manitou Springs is a little further than ideal, though, so if anyone has any connections in the Englewood area of Denver who just happen to be out of town this month and open to sharing their home, let me know.
2. I'm trying, day by day, to determine what is best for the girls, balancing Charles' desire to see them, and theirs to see him, with a need to give them a break from the scariness of it all. That said, we don't need a break from each other - we've always been a family who is intentional about spending time together and instinctively I know that this isn't the time to change that. They've slept in the waiting room for two nights now and have been completely helpful, mature, loving, and wonderful. But knowing this is going to be a long process, I am trying to figure out the best way to meet their anticipated needs. If anyone has been in this situation with kids and has advice, I'd appreciate it. Also, if anyone has a list of "must see" things for kids to recommend in the Denver area beyond the Aquarium and Natural History Museums, let me know. They have baseball gear and their rip sticks with them, which will help in terms of keeping them active, outside, and distracted.
Thank you again for the prayers. Those remain our primary and ongoing need.
FIRST UPDATE, WITH BACKGROUND: THURSDAY, JULY 23
We started the day camping in Monument Valley, up late the night before with a family picnic and star gazing. The night sky was spectacular, far from city lights, and we could see the Milky Way clearly stretched before us. As the four of us (plus Puck) cuddled in the tent together, I thought, "life doesn't get any better than this."
We got up super early for the morning sunrise, which was also simply amazing, rising behind the fabulous monuments of the valley. I literally choked up with tears as we watched the sun rise, still high from our lovely evening and awed with the magnificence of the morning desert colors. We explored a bit, packed up camp, and drove on to Four Corners and then Cortez for breakfast at a cute diner. Then to Mesa Verde, where we explored the ancient ruins. Another spectacular day on a trip that has been really amazing and fun.
Until.
Charles was driving - we were headed from Mesa Verde to Sand Dunes National Park - and I noticed that he was on the wrong side of the yellow line. The road was curving and he often cuts the curves a bit so that K doesn't get overly carsick, but there was something about the way he was doing it that seemed off. When I asked him what he was doing, he startled me, saying, "I don't know." He said, "I was listening to radio discussion about the Planned Parenthood videos and I got really, really mad, now I feel dizzy." I then had him pull over and I drove, assuming he was tired and perhaps feeling the altitude (we had been between 7,000-10,000+ feet for the last few days and were still that high).
He joked and talked as we drove on, making jokes with he girls and otherwise acting normal. Then he suddenly insisted that I pull over immediately so that he could pee. When I pulled off the road, he said that he couldn't get out of the car. Perplexed, I turned the car off and came to the passenger side. He was yanking at his legs with his arms, trying to get them to move and was becoming increasingly agitated. I told him to lean on me and he did, but then when he got down he put his entire weight on me. I fell and he did, too. I got him into a sitting position and K was helping me help him back into the car while G held Puck in the back seat so that he wouldn't run into the highway. A family pulled over to see if we needed help and, like me, assumed that he was suffering from the altitude. They helped drag him into the back of the minivan and advised me not to go over the pass, as we were entering an even more remote area in which we could expect no medical services. (Thank goodness for that advice, which was potentially life saving and the opposite of what I would have done otherwise).
K helped me navigate to the nearest clinic - 25 minutes away - and also called my mom. Charles began throwing up and when we arrived, complained of a sudden, acute, headache. The medical staff at the clinic heard that and immediately put him on stroke treatment, then told me that they needed to medvac him to a stroke facility. In the meantime, both one of the paramedics and the doctor on duty told me - horrors! - that there was a good chance he wouldn't wake up again once sedated because of the seriousness of his stroke and advised me to spend every second with him, including letting the girls tell him goodbye.
There is no way to describe that time.
I did whisper in his ear before he left, asking him to promise not to leave us. He nodded affirmatively and I am doing my best now to hold him to that promise, reminding him of it daily. G had made a beaded necklace for him for his birthday the week before and he was still wearing it, so we took the rosary our friend Susan had given him long ago when he was confirmed at St. Dominics and wrapped it around the necklace. Making the call to his mother was more agony; unspeakable words that I had to say on a connection that kept cutting out.
We stayed with him as they loaded him into the ambulance to take him to the plane, and his last gesture was the sign for, "I love you" as they closed the doors. The girls and I filled up with fuel and began, at about 9PM, the "eight hour" trip to Denver (it was actually closer to five and a half, thank goodness.) We took dark two-lane roads through the mountains and remote towns with few services through the rain. I pulled over just to talk with the Denver hospital and give consent for an emergency procedure that he needed.
When we arrived in Denver at about 2:30AM, he had already been admitted and they had given him a breathing tube. We slept in the waiting room and, well... waited. The doctor we spoke with in the morning had pretty dismal possibilities to share: he confirmed that it was a massive bleeding stroke and said that there was a strong possibility that Charles would not survive. He was under strong sedation and nonresponsive, which agonizingly seemed to confirm the worst.
However, the day got better. We learned more about strokes and the areas affected in his brain. We learned that hope is certainly still appropriate and that while full recovery may be optimistic, there was no reason not to hope and plan for it. We also learned that stroke recovery is full of peaks and valleys, so long term predictions are impossible, especially at this early stage. Best, they lowered the sedation medicine and he began responding, especially to the girls, smiling at them and squeezing their hands.
My brother and uncle surprised us at the hospital, Charles' mom arrived by mid-afternoon, and my parents got here shortly after that. (Many relatives in town for the wedding we had planned our trip around, plus we have family who live a long hour away.)
We finally left the hospital when visiting hours were just about over and went to a hotel room to get much-needed sleep. Just when I was sorting the laundry and trying to clean the vomit from our bags, they hospital called to say that "he is asking for his wife and kids." We raced the ten minutes back and he was indeed asking for us. The girls stayed for a while and K whispered results of recent presidential contender polls that she'd heard on the radio and knew he would like. They are too young to officially be allowed in the ICU, so they waited outside and napped with Charles' mom Ernestine. He was pretty agitated and asked repeatedly to "get me out of here." He was very agitated and forgetful, but at the same time remembered a lot of things as I tried to talk with him about topics that would distract him from various discomforts. About 3AM he had calmed down and slept deeply, so that's when I took the girls and Ernestine back to the hotel.
It was really hard to see him like that.
It is Thursday now and after a few hours of sleep and successfully putting our dirty camping and otherwise soiled stuff into the laundry, we are back at the hospital. More accurately, I am here with the moms (mine and his) and my Dad is at the motel with the girls so that they can swim a little. It is hot here. Puck is with his doggie siblings (my parent's dog). Both our puppy and the girls have been flawlessly strong and resilient since this started.
More updates here as we know more. Charles is sleeping, which he needs. I am sitting by his side and can hear him snoring. We don't need anything right now except lots of prayer and for that we heartily thank all who have been doing so; we can feel the power of God's healing love in the improvements thus far and in the caring concern of the expert staff here.
55 comments:
Therese/Katherine/Gabriana - Our prayers are being sent to Charles and all of you. I can only imagine how scary this was...please stay strong. Thinking of Charles and all of you non-stop. Holding onto Faith and Prayers!
- Blessings from the Coral Family
Frank and I will pray for Charles, the girls and you... every single day until he is better. Please Lord Jesus, help Charles to heal and help Therese and the girls to remain strong. Amen.
My love and prayers are with all of you every second. Thank you Therese for taking the time in the midst of this terrible situation to write this post and keep everyone informed.
My love and prayers are with all of you every second. Thank you Therese for taking the time in the midst of this terrible situation to write this post and keep everyone informed.
We are thinking of you, especially Charles. He is in our prayers, Threse I am awestruck by your strength and courage and glad that Nan and ward and family are with. Sending prayers and love for all. Joan and Bob
Dear Therese, we are praying for all, especially for Charles. We are awestruck by your strength & and courage & are so grateful that Nan , Ward and family are with you. Sending & prayers.
Joan & Bob
Therese, Charles, Katherine and Gabriana,
You are all in my thoughts and prayers. I'm heading to a meeting at St. Dominic's tonight and will make a special visit to the Lady Chapel beforehand to pray for your family.
Love,
Jennie Dahl
Therese-
So many prayers being sent your way. Please remember to take care of yourself as well, get sleep and eat properly so you can continue being the brave wife and mom you have been. We send you all much love and hugs. Prayers of healing for Charles will be said in our home. God Bless, the Cilley Family
We are bombarding the heavens and asking others to do the same. Love to all of you!
TK&G, we're sending Charles and you strength and Love. O is sending an extra strong punch to get his attention :)
Lots of love from the Neuens
From uncle Al and aunt Meg our prayers are with you and the girls foe a speedy recovery for Charles we love you all
We are praying for you and your family during this difficult time. Every one of you have incredible strength, we are confident you will get through this. Please call if you need anything, we are here in Colorado. Love and hugs, the Keefe family.
You are all in my prayers and I trust that God will give you whatever strength you and the girls need to cope with this.
We are steadfastly sending our love and prayers to Charles and to you and your family. Please tell the big guy we love him.
Ben and Chris
Praying for you all and the doctors. Dolores
Our thoughts and prayers are with you and your family. If there's anything we can do, from vet help for Puck to cardiologist/cerebrovascular help for Charles, do let us know. We are wishing for a speedy recovery. Love to you all. The robertsons
Thinking about you and hoping for the best for all of you. So thankful for you that your family was close by. Tell the girls hello from Sadie.
Much love, Jill, Mark and Sadie
Lily and I are praying for Big Daddy and all of you.
I love you T........keep strong and I know that he will heal. love the girls and hugs from Bisek Family in Vegas........
Therese,
Charles is a very strong man physically and mentally. That is great that he wanted the three of you that first night and you went back. He knows now is fighting to make your beautiful family whole again.Our thoughts and prayers are for a healthy recovery for Charles.
Therese I know you will stay strong for Charles and the girls but take a little time for yourself also. Let us know if you need anything or just someone to talk too.
Love,
Uncle Mike and Cynthia
Therese, the kids and I visited Denver during Spring Break this year. I've just sent you an email with some ideas of things to do.
Love from the Websters
Therese, I am friends with Trish Plunkett Hurley. We live close to Swedish -- I think that is where you are? I can help with the dog, the girls, place to stay, ideas for fun (we have a pool we belong to), etc. Please email me or call. Katieglynn9@gmail.com and 720-255-6383
Hugs, love and prayers...we are thinking of you and your family every day.
xo
Uncle Mike and Cyn
Charles, Therese, Katherine and Gabriana,
We are praying for you--for full recovery and for the strength and hope that it takes. Your faith has the power to do what doctors could never prognosticate. Continue to believe. We will, too. I only wish that we were there to be with you. Miss you and hope you know we are there in spirit.
Tell Charles we said, "Esperamos que te recuperes pronto." He'll know what we mean.
Love, Jacki, Stella, Giovanni and Cece
Hi Therese -- we love all of you so much and are praying hard for Charles. Please give the girls a big hug from us!! Thank you for the postings to keep us informed. This really has helped us wrap our minds around this ordeal. XOXOXOXO.
-Susanne and Todd (and Lola)
I love reading your updates Therese. I wonder how you have the time to write them. I think about you and your family just about every minute of every day. We are praying for Charles quick and smooth recovery. You are such a beautiful and strong mother and wife, such an inspiration!!
Love you,
Aunt Meg
I love reading your updates Therese. I wonder how you have the time to write them. I think about you and your family just about every minute of every day. We are praying for Charles quick and smooth recovery. You are such a beautiful and strong mother and wife, such an inspiration!!
Love you,
Aunt Meg
Thank you for all the updates Therese. We're all so thankful that Charles is making remarkable progress. We send lots of prayers and love to you and your family. Please give Charles and the girls hugs and kisses from us. We wish we could be there.
Love you,
Buccheri Family
Thinking of you all the time over here Therese. I wish we would have been able to come down to Denver and visit with you all and give you some hugs. These updates are wonderful and that is so great he is making some progress. We miss you and we will keep thinking positive thoughts and sending you our prayers. Love to you all! Amy, Chris and Quinn xoxox
We are all thinking of you each day and sending prayers! Can't wait to hug you all.
Love the Armanini Family
Charles, Therese and family
Sending you so much love and many prayers from DC. Thank you for sharing your journey to healing. Honored to call you friends, and sending healing and loving prayers from my family to yours, Susan
I've written a few comments but it's not working from my phone. We love the updates and you have been in our prayers since you first wrote us. Thank you for sharing the good, funny and the bad. We will keep the prayers going!!!!!!! So glad he is improving!
Every day the first thing I want to do is run to the computer and check for your beautifully written and painfully honest updates. I think about and pray for you, Charles, Katherine and Gabriana many times a day Therese, and just can't stop thinking about all of you. It's difficult to imagine what it must be like living every day in limbo wondering what will happen next. The small successes are very, very encouraging and we love you all.
We haven't stopped thinking about you since we read your email. We continue to pray daily and are sending you hugs from afar.
Love,
Sarndra, Bobby and Ethan
Therese, we've never met, but you and Charles were gracious enough to invite me to your wedding all those years back, and unfortunately I couldn't be there. Charles and I met in second grade, and have always been there for each other. Please know that my husband and I are praying for Charles, you and the girls and our church members are praying as well. I can't imagine how hard this is for you all, but I know that God is with you in the midst of it all. Thank you for keeping those of us who love and care for Charles (and you all) updated. Know that we appreciate this so much.
Thinking of you and keeping Charles and your family in our thoughts and prayers. We know Charles will make a full recovery !!!
Thanks for letting us know on Facebook. Love Alexander Agopovich & Joe Ravicini (STEP)
Chuckie, Therese and girls, Many thoughts and prayers being sent your way. I went to school with Chuck and he was always smiling and kindhearted. I am so sorry you are all going through this. I will continue to send healing prayers and will look forward to positive news and progress on your blog. Michelle Helbig-Blinkey
Our love to all of you - sending healing thoughts and prayers to Charles, and strength and comfort to you and the girls. I have some info I will email you -
Laura
I love that saying Therese!! It it so true!! For some reason it reminds me of that Leanne Womack song, I hope you dance.
I know you like that song, we had a conversation about it one time. I love you, Charles, K and G!!! Praying every day!!
Love💗
Aunt Meg
We were unplugged for a 5 day camping trip and I was anxious to plug back in and check on Charles! Glad to hear OT went well today. Of course you're feeling impatient at times, Therese! It must be so frustrating and unsettling. Aiming for end of the month sounds like a good prayer to join you in! We were praying in the Sierras and now praying back at sea level. You're doing an amazing job keeping it all together and communicating with all of us! Big hugs to all of you and especially to hard-working Charles on the healing path!
What a roller coaster of emotions daily and hourly for you all. Know that God is with you as are all your family and friends with massive prayers!! Peace and Blessings!!
Praying for you Charles and the girls! You are so strong Therese! Love you so much, look so forward to your daily post!
Aunt Meg
Just received the e-mail from Jacki. I will be praying for Charles. I haven't read all of your posts as I am about to head out the door but I will be thinking of you. Please let us know what we can do to help.
Min
Waaw what a positive evolution. The humor which Charles obviously can display demonstrates his capabilities bith mentally and physically otherwise hewould not do it.
We are in utter admiration for the strength and determination an stamina of you and Charles .
Hang in . Times will get better.
Our thougths are with you all the way
Tom Ev Luka Milo
(Belgium)
Waaw what an evolution!
The humor Charles displays shws his capabilities both mentally and physically.
We are in utter admiration for your strength and determinatiôn.
Our thougths are with you every day.
Keep going .
Tom Ev Luka Milo
(Belgium)
This is all just the most amazing news ever! I have been away from my computer for several days and return to this fabulous news!! Go Charles, GO!! He is clearly so blessed to have such a wonderful wife and daughters!
I have been away from my computer for several days and return to read this FABULOUS news!! You all are so amazing! Go Charles, GO!!
The updates are great to see. Charles, your kids and you are TROOPERS.....hopefully you get home soon and continue your rehab close to home. Love, the Bisek's.....
Praying daily, along with all my prayer warriors in Lourdes....truly believe this is all your strength and healing progress! So happy for you and will not stop!!! Love and peace to you all! Andrea
Hang on Therese and co,
We hope with you and yours!
Not too much ice cream!
Tom Evelyne Luka Milo
Great news!!! Prayers change things, that's for sure!! So happy you four will be heading home. Love you,
Aunt Meg
Therese, Charles, Katherine and Gabriana,
So glad to hear of Charles' great progress and thank you so much for your news posts. Sending out prayers of healing and love daily to your whole family. It's so great that Fr. Steve is visiting often. If our Nov 1st reunion is still a "go", please let me know if I can help in any way (lector and/or EM at Mass, singing, baking etc...).
Love,
Jennie Dahl
Hi Jennie and other St. Dominics friends: yes, the reunion Mass is still on! Mark L. is helping with music, Father Steve with the Mass assignments, and Trish, Theresa, and I will get out an evite soon. Location and other logistics are the same from last year and we are looking forward to it, *maybe* (hopefully) even to getting Charles there! Love, Therese
Hi Therese,
This is Leilani Ahern--we've met a few times and once were blessed to attend a Peopleology class at your home. We learned of Charles' stroke from Erin P, and since then have been following his progress on your blog and, together with our kids, have been praying for him every single day since. I am overjoyed to see that he is home and pray for his continued recovery. I also pray for you and your girls, that Jesus will sustain you in strength and comfort. Your witness throughout this trial has been such an inspiration to me! Thank you for your incredible faith, love and trust in God, and for courageously sharing your journey of suffering with us. Send our love to Charles!
Best wishes for a very Merry Christmas,
Leilani (and Shane, Lily, Gabriel and Finn Ahern)
Post a Comment