July 18, 2006
Gary was his usual self this morning, except now with a bump on his head. He said the PT had come by this morning to see how he was doing. He joked to me that it was too late now, but if he had played his cards right, he could’ve gotten out of a couple of days of therapy.
First up was a Respiratory Class, which I’d already had. The lecturer spent a lot more time on the physiology of respiration than my lecturer had; I enjoyed the review of stuff I’d learned in science classes so long ago but can’t say how many of the other people did ;-). She then went into how the different levels of injury affected breathing, coughing, and sneezing (I have certainly noticed that Gary sneezes differently now that he can’t recruit his abs for the effort). The nerves for the diaphragm are located at levels C3,4, and 5. So those whose injury was at C1through C3 (hereinafter referred to as C1-3s, and similar for those with injuries at other levels) have no control over the diaphragm, no use of rib or abdominal muscles, can’t breathe, cough, or sneeze without assistance (Christopher Reeve was a C1). C4-8s have partial use of the diaphragm, so can usually get off a ventilator; they will not be able to cough without assistance. T1-5s (Gary’s category) have good use of the diaphragm so can get off the ventilator. Some rib muscles may work. Abdominal muscles don’t. Thus coughing and sneezing are weakened and these people may need help to cough up secretions. T6-12s’ diaphragm and rib muscles work well, abdominal muscles may be working; coughing and sneezing are weakened, and they too may need help with coughing. Those whose injuries are in the lumbar region usually have no problems with breathing: all the muscles used in respiration work well.
Then the lecturer went into a discussion of pneumonia, which I have told you is the number one killer of those with SCIs. She covered its signs, treatment (including the “modified Heimlich maneuver” used in assisted coughing), and methods of prevention.
After that we went to a session with an OT – not our usual OT, as she was on jury duty. Before starting it, Gary and I decided to do one of the leg stretches he is supposed to work on, the one where he sits in his wheelchair with his ankle across the opposite knee, which will be useful in getting his socks and shoes off – assuming he ever gets flexible enough to get in this position himself. As I put his leg up, his chair tilted back a little, as it always does when we do this because his muscles are so stiff. Fear flashed in his eyes and I grabbed the chair. We both gave nervous laughs. Something like that wouldn’t cause his chair to tip over, but I’m sure you’ll understand why we were a little on edge about it. At least for the next while, we will make sure the back of his chair is against the edge of the exercise mat when we do this stretch.
In the OT session Gary did “the terrible threes” (described earlier), then the rickshaw, then he practiced learning how to sweep and use a (light) vacuum from his wheelchair. As the OT handed him the broom, she deadpanned, “Now, when you get this room all done . . .” Gary told her that at home we will be hiring this chore out.
On the way back to Gary’s room after the session, the skin nurse stopped me and told me she had changed the protocol for Gary’s sacral flap care. Now I’m to use just the xenaderm on the flap, and I’m to keep an eye out to make sure this change doesn’t cause his wound to become too “wet” from drainage (she said to watch for it looking macerated or turning white).
After we got to his room, his case manager popped in and asked if we wanted to do an in-center pass this weekend. We said “yes.” So this weekend, starting Saturday at 4pm and going to Sunday at 4pm, we will be in a private room in Shepherd, left to ourselves – like a dry run of being at home (it just occurred to me (maybe I’m a little slow) – I’ll bet the reason they call a practice shower session a “wet run” is as a take-off on “dry run”). The nurses will still give Gary the pills he takes (stool softener and pepsin – the latter used as a prophylactic) and his blood thinner shot, but other than that, we are on our own (except in case of emergency). So, Debra, when you come this Sunday, we will be able to watch “The Matador” in relative privacy ;-)
In the early afternoon, the psychologist came by for her scheduled visit. She asked how we were doing after yesterday. Gary said he was fine, I said I was pretty much okay but still a little shaken by watching him get hurt. She said she was sure it had stirred up all kinds of unpleasant memories about his car accident, and she was right. She then asked how we felt about our preparation for being at home on our own. Gary said he felt good. I said I was a little nervous about it, about getting everything “right.” Gary then said he also was a little nervous, but not much, and that as far as my being nervous about doing things right, he had confidence in me. She said our team continues to think we’re doing great. She asked if we’d ever done an in-center pass, and we said we were going to do that this weekend. She thought that would give us (probably meaning me) more confidence that we would be able to handle things at home. But she cautioned that when we went home, our new routine would most likely tire us at the beginning, more so than we might think (though if it’s more than I think, I might be in big trouble ;-)), so we should be careful not to try to do too much outside stuff, not to overextend ourselves socially or with work obligations – just settle into the home situation, keep things simple, and get used to the new routine. She and Gary talked about him returning to work in the fall, and she approved of how his schedule would give him flexibility should he need it (again, thanks, Michel!)
After the psychologist’s visit, Gary had a session with the therapy tech. He did his stretching routine, and then he was supposed to do some exercises that were for both balancing and strength. One was the lying on his side on the exercise mat and lifting a weight out to the front, then bringing it down toward his legs, then up toward his head – he’d done this one before. The other was done from the same side-lying position and was a sawing motion. Unfortunately, pain in his shoulder prevented him from doing the first exercise while lying on his right side. He seems to have pulled something deep in his shoulder when he was stretching a few days ago, and now certain positions lying in bed and certain movements – like reaching forward – are bothering him. This is dismaying news, as he is so dependent on his shoulders now – I hope this is something that is going to resolve quickly.
After the OT session came a session with the PT. Joe called just before we started, and once again I felt a little bad because almost always when he calls something else is going on and I can’t give him my full attention. The main thing he wanted us to know was that the garage people would be coming soon to start their work. (He also told us he’d managed to get to Madison, Wisc., to pick up his wife, Dolores, at the airport just five minutes before she landed – he’d been working at our home until the last possible minute (well, five minutes).)
Back to the PT session. This was a transfer session. Gary practiced transferring from his wheelchair to the type of chair typically found in a living room – “club chair,” I think they’re called, the kind that sink when you sit in them. It was a transfer to a much lower surface than he’d done before, and the PT said he did great, that it went much more smoothly than she expected, as she’d expected him to lose his balance on the soft surface. On the uphill direction she said she’d had to give him about 50% help, but that this was great for his first attempts. They did that transfer again, and then she had him transfer onto a cushioning pad (like memory foam wrapped in plastic) on a bench in the hallway. She is going to order him such a pad in case he doesn’t always want to bother with having to move his ROHO cushion from his wheelchair to underneath him on the surface he’s transferred onto. The ROHO cushion is supposed to be the best possible cushioning surface. Before he uses a different cushion, however, he needs to test it out, just as he will a new pair of shoes (and so forth): first try it for half an hour and then check his skin, then for an hour and then check the skin, and so forth, until he has tried it out without incident for the amount of time he plans to use it. If he ever finds red marks on his skin during these tests of the cushion (or of the new shoes, or of whatever he is testing), if after a half hour of taking pressure off that area, the red marks go away, then that is fine, but if the red marks stay that is a . . . red flag . . . to using that item or whatever (plus he will have to keep any pressure off that area of his skin until the red marks completely go away).
His final transfer was to a shower bench of the type he is getting, but with it set astride a regular bathtub instead of inside a roll-in shower, which is what we’ve been practicing in – he might need to do this kind of transfer if he is ever in a hotel room without a roll-in shower, for example. He couldn’t do this transfer without quite a bit of aid because, for one thing, he couldn’t get his legs into and out of the tub without violating his restriction on bending.
After that session, he and I got him transferred into bed. Sometimes I feel like we’re getting worse at this without the therapists around to give us tips, but Gary doesn’t seem concerned about it. Right after I got him settled, the phone rang. It was the housing person for Shepherd; Gary had left him a message for earlier. He informed us that we would be able to get internet access while we were in the apartments for Day Program (Gary started the conversation off by saying he knew that this was a bit silly in the scheme of things needed in accessible living quarters, but that the two of us were addicted to the internet and wondered about such access); the housing guy also told us that he wouldn’t know which apartment building we were going to be put in, and all the units were full anyway, so as a consequence we couldn’t check out the place beforehand. Well, as long as we can check our email, we should be set ;-)
After that conversation ended, the phone rang again. The publicity department at Shepherd was calling to say that our local paper is interested in doing a story on Gary – the paper will be calling him tomorrow for an interview! (Gary told me later this evening that he was a little nervous about it – what would they ask him? what would he say?)
I then took off for my usual evening hotel routine, then returned for what has become our evening Shepherd routine: getting Gary transferred into bed (after his ice cream treat); helping him with the stretches; helping him prone in order to change his dressing; getting him repositioned and pillowed on his side for the first part of his night. It seems almost unbelievable to me that this takes us an hour and a half to do, but it does. I reflected on that as I watched Gary crawl on his belly in the bed to help reposition himself. No doubt put into a particular frame of mind by seeing him fall the day before, I had a flash of the “shock” stage of grief (if you remember that from the Emotional Adjustment lecture I told you about). It was just hard to believe that this is the way it’s always going to be now, that he’s not going to get over this, that he is going to be dragging those dead legs around for the rest of his life, that simple daily tasks that “should” be easy are not. I hope he’ll always be able to laugh, as he did today, at things like how long it takes him to get his foot off the footplate of his wheelchair to prepare for a transfer.
Actually, I’m sure he will. That’s the kind of person he is. I hope *I* will always be able to stop and laugh with him – I am the one in whom the urge sometimes arises to just take his foot off the damn footplate for him so we can get on with things.
So far, I’ve resisted the urge ;-)
All for now.
Gary was his usual self this morning, except now with a bump on his head. He said the PT had come by this morning to see how he was doing. He joked to me that it was too late now, but if he had played his cards right, he could’ve gotten out of a couple of days of therapy.
First up was a Respiratory Class, which I’d already had. The lecturer spent a lot more time on the physiology of respiration than my lecturer had; I enjoyed the review of stuff I’d learned in science classes so long ago but can’t say how many of the other people did ;-). She then went into how the different levels of injury affected breathing, coughing, and sneezing (I have certainly noticed that Gary sneezes differently now that he can’t recruit his abs for the effort). The nerves for the diaphragm are located at levels C3,4, and 5. So those whose injury was at C1through C3 (hereinafter referred to as C1-3s, and similar for those with injuries at other levels) have no control over the diaphragm, no use of rib or abdominal muscles, can’t breathe, cough, or sneeze without assistance (Christopher Reeve was a C1). C4-8s have partial use of the diaphragm, so can usually get off a ventilator; they will not be able to cough without assistance. T1-5s (Gary’s category) have good use of the diaphragm so can get off the ventilator. Some rib muscles may work. Abdominal muscles don’t. Thus coughing and sneezing are weakened and these people may need help to cough up secretions. T6-12s’ diaphragm and rib muscles work well, abdominal muscles may be working; coughing and sneezing are weakened, and they too may need help with coughing. Those whose injuries are in the lumbar region usually have no problems with breathing: all the muscles used in respiration work well.
Then the lecturer went into a discussion of pneumonia, which I have told you is the number one killer of those with SCIs. She covered its signs, treatment (including the “modified Heimlich maneuver” used in assisted coughing), and methods of prevention.
After that we went to a session with an OT – not our usual OT, as she was on jury duty. Before starting it, Gary and I decided to do one of the leg stretches he is supposed to work on, the one where he sits in his wheelchair with his ankle across the opposite knee, which will be useful in getting his socks and shoes off – assuming he ever gets flexible enough to get in this position himself. As I put his leg up, his chair tilted back a little, as it always does when we do this because his muscles are so stiff. Fear flashed in his eyes and I grabbed the chair. We both gave nervous laughs. Something like that wouldn’t cause his chair to tip over, but I’m sure you’ll understand why we were a little on edge about it. At least for the next while, we will make sure the back of his chair is against the edge of the exercise mat when we do this stretch.
In the OT session Gary did “the terrible threes” (described earlier), then the rickshaw, then he practiced learning how to sweep and use a (light) vacuum from his wheelchair. As the OT handed him the broom, she deadpanned, “Now, when you get this room all done . . .” Gary told her that at home we will be hiring this chore out.
On the way back to Gary’s room after the session, the skin nurse stopped me and told me she had changed the protocol for Gary’s sacral flap care. Now I’m to use just the xenaderm on the flap, and I’m to keep an eye out to make sure this change doesn’t cause his wound to become too “wet” from drainage (she said to watch for it looking macerated or turning white).
After we got to his room, his case manager popped in and asked if we wanted to do an in-center pass this weekend. We said “yes.” So this weekend, starting Saturday at 4pm and going to Sunday at 4pm, we will be in a private room in Shepherd, left to ourselves – like a dry run of being at home (it just occurred to me (maybe I’m a little slow) – I’ll bet the reason they call a practice shower session a “wet run” is as a take-off on “dry run”). The nurses will still give Gary the pills he takes (stool softener and pepsin – the latter used as a prophylactic) and his blood thinner shot, but other than that, we are on our own (except in case of emergency). So, Debra, when you come this Sunday, we will be able to watch “The Matador” in relative privacy ;-)
In the early afternoon, the psychologist came by for her scheduled visit. She asked how we were doing after yesterday. Gary said he was fine, I said I was pretty much okay but still a little shaken by watching him get hurt. She said she was sure it had stirred up all kinds of unpleasant memories about his car accident, and she was right. She then asked how we felt about our preparation for being at home on our own. Gary said he felt good. I said I was a little nervous about it, about getting everything “right.” Gary then said he also was a little nervous, but not much, and that as far as my being nervous about doing things right, he had confidence in me. She said our team continues to think we’re doing great. She asked if we’d ever done an in-center pass, and we said we were going to do that this weekend. She thought that would give us (probably meaning me) more confidence that we would be able to handle things at home. But she cautioned that when we went home, our new routine would most likely tire us at the beginning, more so than we might think (though if it’s more than I think, I might be in big trouble ;-)), so we should be careful not to try to do too much outside stuff, not to overextend ourselves socially or with work obligations – just settle into the home situation, keep things simple, and get used to the new routine. She and Gary talked about him returning to work in the fall, and she approved of how his schedule would give him flexibility should he need it (again, thanks, Michel!)
After the psychologist’s visit, Gary had a session with the therapy tech. He did his stretching routine, and then he was supposed to do some exercises that were for both balancing and strength. One was the lying on his side on the exercise mat and lifting a weight out to the front, then bringing it down toward his legs, then up toward his head – he’d done this one before. The other was done from the same side-lying position and was a sawing motion. Unfortunately, pain in his shoulder prevented him from doing the first exercise while lying on his right side. He seems to have pulled something deep in his shoulder when he was stretching a few days ago, and now certain positions lying in bed and certain movements – like reaching forward – are bothering him. This is dismaying news, as he is so dependent on his shoulders now – I hope this is something that is going to resolve quickly.
After the OT session came a session with the PT. Joe called just before we started, and once again I felt a little bad because almost always when he calls something else is going on and I can’t give him my full attention. The main thing he wanted us to know was that the garage people would be coming soon to start their work. (He also told us he’d managed to get to Madison, Wisc., to pick up his wife, Dolores, at the airport just five minutes before she landed – he’d been working at our home until the last possible minute (well, five minutes).)
Back to the PT session. This was a transfer session. Gary practiced transferring from his wheelchair to the type of chair typically found in a living room – “club chair,” I think they’re called, the kind that sink when you sit in them. It was a transfer to a much lower surface than he’d done before, and the PT said he did great, that it went much more smoothly than she expected, as she’d expected him to lose his balance on the soft surface. On the uphill direction she said she’d had to give him about 50% help, but that this was great for his first attempts. They did that transfer again, and then she had him transfer onto a cushioning pad (like memory foam wrapped in plastic) on a bench in the hallway. She is going to order him such a pad in case he doesn’t always want to bother with having to move his ROHO cushion from his wheelchair to underneath him on the surface he’s transferred onto. The ROHO cushion is supposed to be the best possible cushioning surface. Before he uses a different cushion, however, he needs to test it out, just as he will a new pair of shoes (and so forth): first try it for half an hour and then check his skin, then for an hour and then check the skin, and so forth, until he has tried it out without incident for the amount of time he plans to use it. If he ever finds red marks on his skin during these tests of the cushion (or of the new shoes, or of whatever he is testing), if after a half hour of taking pressure off that area, the red marks go away, then that is fine, but if the red marks stay that is a . . . red flag . . . to using that item or whatever (plus he will have to keep any pressure off that area of his skin until the red marks completely go away).
His final transfer was to a shower bench of the type he is getting, but with it set astride a regular bathtub instead of inside a roll-in shower, which is what we’ve been practicing in – he might need to do this kind of transfer if he is ever in a hotel room without a roll-in shower, for example. He couldn’t do this transfer without quite a bit of aid because, for one thing, he couldn’t get his legs into and out of the tub without violating his restriction on bending.
After that session, he and I got him transferred into bed. Sometimes I feel like we’re getting worse at this without the therapists around to give us tips, but Gary doesn’t seem concerned about it. Right after I got him settled, the phone rang. It was the housing person for Shepherd; Gary had left him a message for earlier. He informed us that we would be able to get internet access while we were in the apartments for Day Program (Gary started the conversation off by saying he knew that this was a bit silly in the scheme of things needed in accessible living quarters, but that the two of us were addicted to the internet and wondered about such access); the housing guy also told us that he wouldn’t know which apartment building we were going to be put in, and all the units were full anyway, so as a consequence we couldn’t check out the place beforehand. Well, as long as we can check our email, we should be set ;-)
After that conversation ended, the phone rang again. The publicity department at Shepherd was calling to say that our local paper is interested in doing a story on Gary – the paper will be calling him tomorrow for an interview! (Gary told me later this evening that he was a little nervous about it – what would they ask him? what would he say?)
I then took off for my usual evening hotel routine, then returned for what has become our evening Shepherd routine: getting Gary transferred into bed (after his ice cream treat); helping him with the stretches; helping him prone in order to change his dressing; getting him repositioned and pillowed on his side for the first part of his night. It seems almost unbelievable to me that this takes us an hour and a half to do, but it does. I reflected on that as I watched Gary crawl on his belly in the bed to help reposition himself. No doubt put into a particular frame of mind by seeing him fall the day before, I had a flash of the “shock” stage of grief (if you remember that from the Emotional Adjustment lecture I told you about). It was just hard to believe that this is the way it’s always going to be now, that he’s not going to get over this, that he is going to be dragging those dead legs around for the rest of his life, that simple daily tasks that “should” be easy are not. I hope he’ll always be able to laugh, as he did today, at things like how long it takes him to get his foot off the footplate of his wheelchair to prepare for a transfer.
Actually, I’m sure he will. That’s the kind of person he is. I hope *I* will always be able to stop and laugh with him – I am the one in whom the urge sometimes arises to just take his foot off the damn footplate for him so we can get on with things.
So far, I’ve resisted the urge ;-)
All for now.
posted by Peg Daniels at 3:36 PM
0 Comments:
Post a Comment
<< Home