My apologies to Chris's numerous fans for not posting much since Christmas. The daily grind of work-hospital-sleep-repeat has been wearing me down, and Chris's routine at Spaulding has been fairly monotonous. His progress remains slow and steady - nothing miraculous, just small, incremental improvements. The road back is going to be a long one.
A typical day for Chris at Spaulding starts with an advanced-soft breakfast. Sometimes he has "breakfast group," which I guess is just a way for them to make sure the inmates don't spend too much time by themselves in their rooms. During the day, he has an hour each of physical, occupational, and speech therapies, and sometimes more group time. I usually visit after work, bringing real food when I can to rescue him from the horrors of an advanced-soft dinner (cut up chicken is really unappetizing). I'm running out of healthful take-out ideas, though.
In physical therapy, he's working on going longer distances with the walker and even sometimes short tries with his cane. He says he still "wobbly" with the cane, though, so when he comes home he'll have a wheelchair and walker to move around the house. Thankfully, our house has a fairly open floor plan, so there aren't a lot of corners for him to navigate. I also just had Bathfitters come in to take out the bathtub and put in a shower stall, so he should be able to get in and out of the shower more easily. He's also starting to get up a few stairs, and, again, we'll have to make some changes to our garage stairs so he'll be able to get in and out.
Occupational therapy has got him back in the kitchen, where he made muffins from a mix. They're also working with him on other activities of daily living such as .... stuffing envelopes, mini-golf and bowling. Seriously, they're also making sure he can get dressed and take care of his personal hygiene and get around the house. This week they're going to spend some time on getting in and out of bed safely, which will be more difficult at home without the side rails.
In speech therapy every day, he focuses on words that are hard for him and strategies for making himself understood. Mercifully, there were no apparent deficits in thinking or understanding words, so this is not as difficult as it could be. It's an area Chris struggled with before, though, so it's tough to have to start again from ten steps back.
He will be coming home at the end of next week. The case manager will talk to us both about the kinds of services he'll need when he gets here. Depending on how far he gets with OT, he may still need some daily help getting dressed and washed up, and, for a while, he'll have his therapists visit him at home since he won't be able to drive. I know that having him home will bring with it a whole new set of challenges, but we are both up for taking them on. It's been two very long months since he's been home - it will be so good to sit in front of the fireplace or read the Sunday paper with him again! Visits home just don't cut it, since it's kind of depressing to have to bring him back to the dingy yellow halls of Spaulding.
He says to everyone "I'll be free soon, and I look forward to seeing everyone REAL soon!"
Saturday, January 20, 2007
Monday, December 25, 2006
Home for the holidays
Can you believe that just three weeks ago today Ann and I were spending our first day in Denver wondering if Chris would open his eyes? Today we brought him home for a leave of absence from Spaulding and enjoyed a wonderful Christmas day together.
This happy day was made possible by the hard work Chris has been doing in rehab and by the help of our loved ones. Chris worked with me, Ann, and my sister Kris (in the photo) to practice transferring from the chair to the car so that he could come home with us for the day, and his brother-in-law Herb built a ramp so that we could easily get him into the house. It was so great to see him relaxing in the living room and laughing at the antics of the dogs!
We were all a little tuckered out when we delivered him back to his room at Spaulding, where he faces another week of hard work with the PTs, OTs and SLPs. I know it's tough for him to be there, but I also know that he will be out of there before we know it. He's making such great progress, I feel in my bones that it won't be long before the staff at Spaulding start making plans to send him home. His friends at Loon have dubbed him "Mr. Unbreakable," which is perfect to describe his spirit. That's what's going to keep him going when he starts going stir crazy, his own unbreakable spirit and the ongoing support of his wonderful friends. We look forward to seeing you all soon, either at Spaulding or in the real world!!
Warmest greetings of the season to all.
Chris & B
This happy day was made possible by the hard work Chris has been doing in rehab and by the help of our loved ones. Chris worked with me, Ann, and my sister Kris (in the photo) to practice transferring from the chair to the car so that he could come home with us for the day, and his brother-in-law Herb built a ramp so that we could easily get him into the house. It was so great to see him relaxing in the living room and laughing at the antics of the dogs!
We were all a little tuckered out when we delivered him back to his room at Spaulding, where he faces another week of hard work with the PTs, OTs and SLPs. I know it's tough for him to be there, but I also know that he will be out of there before we know it. He's making such great progress, I feel in my bones that it won't be long before the staff at Spaulding start making plans to send him home. His friends at Loon have dubbed him "Mr. Unbreakable," which is perfect to describe his spirit. That's what's going to keep him going when he starts going stir crazy, his own unbreakable spirit and the ongoing support of his wonderful friends. We look forward to seeing you all soon, either at Spaulding or in the real world!!
Warmest greetings of the season to all.
Chris & B
Wednesday, December 20, 2006
Boston, you're my home
The eagle has landed!
Chris has been installed at Spaulding Rehab, room 803W. The address is 125 Nashua St, Boston, Ma 02114.
He will be starting his program of rehabilitation to address the residual effects of the brain injury, primarily weakness on the right side of his body. I have no doubt that he will work hard to get back home as soon as possible.
Chris has been installed at Spaulding Rehab, room 803W. The address is 125 Nashua St, Boston, Ma 02114.
He will be starting his program of rehabilitation to address the residual effects of the brain injury, primarily weakness on the right side of his body. I have no doubt that he will work hard to get back home as soon as possible.
Monday, December 18, 2006
Out of the west
It seems unreal that I will be bringing Chris home tomorrow. Two weeks ago today at this time I was sitting at his bedside hoping that he would open his eyes and shaking with fear that that might not happen. I remember that the moon was full and clear in the sky, and I prayed that she would watch over him as he slept. Now the moon is a waning crescent, closing another cycle. In the Wiccan tradition, this is a time to banish troubles and worry, vanquish obstacles, and eliminate illness.
Chris and I both know that he has a lot of work ahead of him, but I have no doubts that he is up for the challenge. Every day he shows his determination by standing longer and working harder than even the therapists expect him to. They wanted him to stand up for 5 minutes, he did 10 - and then insisted on doing it again. He's done his own mini-OT sessions by shaving himself (with a little help on the right cheek.) The right side of his body is still much weaker, but the neurology doc firmly believes that this will come back with rehab. He didn't hesitate for a second this morning when Chris asked if his speech would recover; he reassured us that it might take a month or two, but everything would be just fine.
I don't know why we were among the lucky ones. I've met people here whose loved ones have been in critical conditions for 6 weeks, 2 months, or more. I don't know what we've done to deserve being able to go home after only 2 weeks, but I will thank the moon and stars and whoever made them for giving us this gift, and I thank all of you who have continued to send your warm thoughts and prayers.
Continue to watch this space for Chris's coordinates at Spaulding. I'm hoping he has internet access there; if not, I will print out all your emails and bring them in for him to read. I know that the support and encouragement of his friends is what really keeps Chris going, so I will also post visiting hours for anyone who is in the area. He will be so happy to see some familiar faces other than mine!
Peace and joy,
B
Chris and I both know that he has a lot of work ahead of him, but I have no doubts that he is up for the challenge. Every day he shows his determination by standing longer and working harder than even the therapists expect him to. They wanted him to stand up for 5 minutes, he did 10 - and then insisted on doing it again. He's done his own mini-OT sessions by shaving himself (with a little help on the right cheek.) The right side of his body is still much weaker, but the neurology doc firmly believes that this will come back with rehab. He didn't hesitate for a second this morning when Chris asked if his speech would recover; he reassured us that it might take a month or two, but everything would be just fine.
I don't know why we were among the lucky ones. I've met people here whose loved ones have been in critical conditions for 6 weeks, 2 months, or more. I don't know what we've done to deserve being able to go home after only 2 weeks, but I will thank the moon and stars and whoever made them for giving us this gift, and I thank all of you who have continued to send your warm thoughts and prayers.
Continue to watch this space for Chris's coordinates at Spaulding. I'm hoping he has internet access there; if not, I will print out all your emails and bring them in for him to read. I know that the support and encouragement of his friends is what really keeps Chris going, so I will also post visiting hours for anyone who is in the area. He will be so happy to see some familiar faces other than mine!
Peace and joy,
B
Saturday, December 16, 2006
Counting down
Well, it looks like we'll actually be winging home on Tuesday due to administrative delays. No worries - just more paperwork that had to be generated.
Chris hit another milestone yesterday - they removed the n.g. feeding tube. As usual, differences of opinion abounded - one doc said it would be okay to just take it out, another recommended replacing it with another kind of tube, a third said it should absolutely stay in because it wouldn't be easy to put in a replacement. And, as usual, none of them were talking to each other to explain their reasoning, so the nursing staff had no idea how to proceed. I asked the speech therapist if she could get the opposing parties on the phone to talk it out, and apparently they decided that Chris was eating well enough that they could take it out. He still can't handle liquids, though, so they are giving him IV fluids.
Having that thing out of his nose made an immediate difference in how well Chris was able to swallow. He ate more than half of his delicious pureed beef dinner, and all of the strawberry yogurt I brought in. It's also helping his speech some, especially with nasal sounds. M's and n's are clearer now.
The docs continue to be amazed at how fast Chris is recovering from his massive injury. The neurosurgeon, the one who had said the prognosis was grim when he completed the surgery, says Chris is WAY ahead of the curve. Let's all just continue to pray that Chris stays on this path, with no major detours, so that he will be able to come home soon.
B
Chris hit another milestone yesterday - they removed the n.g. feeding tube. As usual, differences of opinion abounded - one doc said it would be okay to just take it out, another recommended replacing it with another kind of tube, a third said it should absolutely stay in because it wouldn't be easy to put in a replacement. And, as usual, none of them were talking to each other to explain their reasoning, so the nursing staff had no idea how to proceed. I asked the speech therapist if she could get the opposing parties on the phone to talk it out, and apparently they decided that Chris was eating well enough that they could take it out. He still can't handle liquids, though, so they are giving him IV fluids.
Having that thing out of his nose made an immediate difference in how well Chris was able to swallow. He ate more than half of his delicious pureed beef dinner, and all of the strawberry yogurt I brought in. It's also helping his speech some, especially with nasal sounds. M's and n's are clearer now.
The docs continue to be amazed at how fast Chris is recovering from his massive injury. The neurosurgeon, the one who had said the prognosis was grim when he completed the surgery, says Chris is WAY ahead of the curve. Let's all just continue to pray that Chris stays on this path, with no major detours, so that he will be able to come home soon.
B
Friday, December 15, 2006
Another weekend approaches
Sorry I didn't post yesterday - for some reason I couldn't log on.
This will be a brief post, since I need to get over to St. A's to help Chris eat breakfast.
Yes! Chris is eating pureed foods now; the barium swallow test went well on Wednesday. He still has the n.g. tube so they can feed him from 8 p.m. to 8 a.m., but he is allowed "real" food during the day. The speech therapists thinks this will help him strengthen his tongue and swallowing muscles, which will also help with speech. As soon as they think Chris can eat enough on his own, they'll take the tube out.
Yesterday's activities also included ultrasound of legs to look for blood clots, removal of the IV filter (that was in place to prevent blood clots from getting to his lungs), CT scan, and more intensive PT. They actually hauled Chris to his feet for the first time and made him stand for a few seconds. Yay!! I was going to take a picture, but they didn't tie up his johnnie in the back, so it wouldn't have been appropriate.
Now, for the drum roll........ They are shipping Chris out of here on Monday!!! He will be flown back to Boston and spend some time in Spaulding rehab. Wahoo!
Gotta go - breakfast time approaches. I will post more later today or tomorrow.
B
This will be a brief post, since I need to get over to St. A's to help Chris eat breakfast.
Yes! Chris is eating pureed foods now; the barium swallow test went well on Wednesday. He still has the n.g. tube so they can feed him from 8 p.m. to 8 a.m., but he is allowed "real" food during the day. The speech therapists thinks this will help him strengthen his tongue and swallowing muscles, which will also help with speech. As soon as they think Chris can eat enough on his own, they'll take the tube out.
Yesterday's activities also included ultrasound of legs to look for blood clots, removal of the IV filter (that was in place to prevent blood clots from getting to his lungs), CT scan, and more intensive PT. They actually hauled Chris to his feet for the first time and made him stand for a few seconds. Yay!! I was going to take a picture, but they didn't tie up his johnnie in the back, so it wouldn't have been appropriate.
Now, for the drum roll........ They are shipping Chris out of here on Monday!!! He will be flown back to Boston and spend some time in Spaulding rehab. Wahoo!
Gotta go - breakfast time approaches. I will post more later today or tomorrow.
B
Wednesday, December 13, 2006
And now a word from our hero
On a happier note, since I noticed that Chris had much better hand and finger control, I decided to bring in my laptop and give him another try at typing something. Here's his first message:
**********************************************************************************
hi fans a communication from the west.
first, thanks for all those calls, letters & cards.
they really raised my spirits during a difficult time. the big focus now is to arrange for a medflight b acck to boston, and to get me on it.
*********************************************************************************
I second that emotion.
B
**********************************************************************************
hi fans a communication from the west.
first, thanks for all those calls, letters & cards.
they really raised my spirits during a difficult time. the big focus now is to arrange for a medflight b acck to boston, and to get me on it.
*********************************************************************************
I second that emotion.
B
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