July 30, 2006 into July 31, 2006
We had a few phone calls in the late afternoon, early evening – these people had probably just read the blog and had wanted to make sure we were still surviving ;-), Gary returned a call from his brother Donne, only, as usual, Donne was out on the golf course ;-), so Gary held the conversation entirely with his sister-in-law Phyllis. My older sister, Janet, called. And Gary’s Uncle Rollie called as well.
Also this afternoon, Gary checked into walkie-talkies and the like, and ordered us two-way radios with an 8mi. radius – quicker communication than by cell phone, should that be needed.
We had thought the bladder situation had improved on its own, but the problem arose again and Gary found blood in his urine, so we’re thinking it’s a UTI. He’ll have it taken care of tomorrow (we hope) – I don’t know if they’ll deal with it in day program or if we’ll have to go to Piedmont’s emergency room.
Based on our stay at the apartment so far, Gary has come up with a few more goals for Day Program. First, he’d really like to be able to do some transferring on his own, even if that means using the transfer board. The only times he’s practiced with a transfer board is in getting in and out of the car. He feels confident that if he could practice transferring with a board to and from wheelchair and exercise mat, and then to and from wheelchair and bed, he should be able to do those without assistance by the end of Day Program (and maybe even those same transfers without a board by then). But right now, he is at other people’s “mercy” – he’s stuck in bed or in his wheelchair until I or someone else assist him with the transfer, and he doesn’t like that feeling.
The other thing he’d like to work on is maneuvering in the hospital bed (turning, sitting up). The therapists had been having him practice such maneuvering in a double bed, but there, he has lots of room for rolling – if he tried that in the hospital bed, he’d either roll right off the bed or into the bed rail, the bed being much narrower than the one he’d been in at Shepherd.
July 31, 2006
Good thing we didn’t go straight home. In addition to the bladder problem that has arisen, last night while changing Gary’s bandage the skin along one seam of the flap looked very red. We brought these concerns up to the nurse assigned to Gary for Day Program during his nursing evaluation with her (which occurred right after his Day Program orientation). After finishing asking him some standardized questions (major surgeries, etc), she had us transfer him to a low and wide table then took a urine sample and looked at his flap. His Day Program doctor, who turns out to be the same doctor he has been having, was supposed to meet with him the following hour, so until that time the nurse had us go out to the gym and have Gary prone on an exercise mat (which would get his weight off the area) until the doctor could see him, which was about ten minutes later – and we had to go back to the same room we’d just been in and have Gary get back on the table again. So in the space of less than an hour, we did six transfers, and we had already done three before this time, so that was a bit of work!
The doctor thought the problem might be with the loaner chair (yet another problem with it!), so later Gary’s Day Program PT put some foam on the back of the chair where it might have been pressing into him. So now I just keep an eye on the red area. We hope that fixes the problem as otherwise we are clueless as to what has caused it – which is scary.
His urine sample came back negative for bacteria, so the next possibility is the his bladder has become overactive, which is not uncommon in those who have a spinal cord injury. The first solution to try is to make sure not to drink more than 6-8 cups of fluid per day (yet on the other hand, you don’t want to drink less, in order to keep skin and bowel happy) and go back to an IC every six hours (which means I’ll have to help him prone about 12:30 am – ychh; anyone know how to survive without sleep?). If that doesn’t bring the problem under control (and I have my doubts, since I don’t think he’s been drinking more than that), is to go back to doing ICs every four hours (with the negative effect that has on one’s sleeping schedule!). If it still doesn’t come under control, then they start looking at things like medications to stop the reflexing or continually wearing a “condom catheter” (a condom-like thingymabob is worn, and it attaches to a tube, which attaches to a leg bag) to catch the leaking, while still doing the ICs as always (in other words, we’re not talking a permanent indwelling catheter, which carries its own problems that I believe I mentioned to you long ago).
The orientation, the nurse evaluation, and the doctor consult used up the entire morning. Gary ate in the cafeteria and I brought my rice and joined him (Gary noted that the cafeteria food – at least today’s – was better than the food brought in trays to the patients’ bedsides).
After lunch came an hour-long evaluation by Gary’s new OT. One thing she brought up is that Alabama’s Vocational Rehab Department should help pay for Gary’s driver evaluation and for any modifications made to a car we already own that would enable Gary to drive it.
She and Gary also went over his goals, and in addition to the transfer and bed mobility ones I mentioned above, he added dressing on his own and bathing (though given his restrictions it is highly unlikely he will meet these goals for a while) – and doing the dishes. Yes, you read that right ;-). He wants to take on his previous chores as much as he can, except for mowing the lawn ;-). (At this point, the OT said many people decided they didn’t want to learn how to do such chores again, and I thought, just who does she think is going to do them? I mentioned this to Gary later, and he said he’d had the same thought, and that it would be very selfish of him to make such a decision. Now you see why I married the guy? ;-))
The OT asked if he was returning to work, so he told her about the plans for that. She then asked if he had any work-related issues, but he said that the people in the math department had taken care of that!
An hour-long PT evaluation followed this, and the one thing they added to the list of goals was working on his balance.
After this I was supposed to get him on the mat and stretch him for a half-hour, but the nurse had told us to use that time to get him prone and off his “area of concern.” Then came a half-hour session of goal setting, where everyone on Gary’s new team got together and Gary was asked to state his goals, even if he’d already gone over them in some of the other sessions. He started by saying his goal was to be as independent as possible, and then it was mostly a repeat of what he’d said to them earlier. The case manager gave him a written list of what they’d come up with from their side (I think they were getting this together during that previous half hour). She told me she was going to give us a copy, so I didn’t need to take notes. That intimidated me into not taking the notes (which means I don’t remember much of what was said), but then we didn’t get a copy – maybe it’s coming later. I think that the only things that hadn’t been specifically mentioned before came from the nurse. She said her goal was to help him get his bladder under control, teach him medicine management (should that become a necessity), and make sure he understood the medical complications that could arise as the result of having an SCI. They also want to know that he can verbalize all the aspects of his care to someone else, in case there is ever the need for someone else besides me to help him with something.
After this I drove back to the apartment to start my dinner. Gary arrived soon after, having taken the bus. I then went off to my next session with a personal trainer, this time with the guy with the rehab and physical therapy background. I’m afraid I wimped out. I’m more tired from this new routine (specifically from the interrupted sleep), and I was afraid to do too much for fear of pushing myself over the edge.
Well, I have much less time now for blog-writing, so I’ll skip writing my workout here. This guy actually had his stuff written out, so I have a record of it for myself.
Well, now I’m going to try to doze before getting up at midnight . . .
August 1, 2006
. . . Ychh, felt sick at midnight from waking up at the wrong part of the sleep cycle. And we rush like mad in the morning to get everything done. As Gary said about 8:15 am as he wheeled out the door for the bus, “This (Day Program) schedule is a bitch. School is going to seem easy compared to this.”
All for now.
We had a few phone calls in the late afternoon, early evening – these people had probably just read the blog and had wanted to make sure we were still surviving ;-), Gary returned a call from his brother Donne, only, as usual, Donne was out on the golf course ;-), so Gary held the conversation entirely with his sister-in-law Phyllis. My older sister, Janet, called. And Gary’s Uncle Rollie called as well.
Also this afternoon, Gary checked into walkie-talkies and the like, and ordered us two-way radios with an 8mi. radius – quicker communication than by cell phone, should that be needed.
We had thought the bladder situation had improved on its own, but the problem arose again and Gary found blood in his urine, so we’re thinking it’s a UTI. He’ll have it taken care of tomorrow (we hope) – I don’t know if they’ll deal with it in day program or if we’ll have to go to Piedmont’s emergency room.
Based on our stay at the apartment so far, Gary has come up with a few more goals for Day Program. First, he’d really like to be able to do some transferring on his own, even if that means using the transfer board. The only times he’s practiced with a transfer board is in getting in and out of the car. He feels confident that if he could practice transferring with a board to and from wheelchair and exercise mat, and then to and from wheelchair and bed, he should be able to do those without assistance by the end of Day Program (and maybe even those same transfers without a board by then). But right now, he is at other people’s “mercy” – he’s stuck in bed or in his wheelchair until I or someone else assist him with the transfer, and he doesn’t like that feeling.
The other thing he’d like to work on is maneuvering in the hospital bed (turning, sitting up). The therapists had been having him practice such maneuvering in a double bed, but there, he has lots of room for rolling – if he tried that in the hospital bed, he’d either roll right off the bed or into the bed rail, the bed being much narrower than the one he’d been in at Shepherd.
July 31, 2006
Good thing we didn’t go straight home. In addition to the bladder problem that has arisen, last night while changing Gary’s bandage the skin along one seam of the flap looked very red. We brought these concerns up to the nurse assigned to Gary for Day Program during his nursing evaluation with her (which occurred right after his Day Program orientation). After finishing asking him some standardized questions (major surgeries, etc), she had us transfer him to a low and wide table then took a urine sample and looked at his flap. His Day Program doctor, who turns out to be the same doctor he has been having, was supposed to meet with him the following hour, so until that time the nurse had us go out to the gym and have Gary prone on an exercise mat (which would get his weight off the area) until the doctor could see him, which was about ten minutes later – and we had to go back to the same room we’d just been in and have Gary get back on the table again. So in the space of less than an hour, we did six transfers, and we had already done three before this time, so that was a bit of work!
The doctor thought the problem might be with the loaner chair (yet another problem with it!), so later Gary’s Day Program PT put some foam on the back of the chair where it might have been pressing into him. So now I just keep an eye on the red area. We hope that fixes the problem as otherwise we are clueless as to what has caused it – which is scary.
His urine sample came back negative for bacteria, so the next possibility is the his bladder has become overactive, which is not uncommon in those who have a spinal cord injury. The first solution to try is to make sure not to drink more than 6-8 cups of fluid per day (yet on the other hand, you don’t want to drink less, in order to keep skin and bowel happy) and go back to an IC every six hours (which means I’ll have to help him prone about 12:30 am – ychh; anyone know how to survive without sleep?). If that doesn’t bring the problem under control (and I have my doubts, since I don’t think he’s been drinking more than that), is to go back to doing ICs every four hours (with the negative effect that has on one’s sleeping schedule!). If it still doesn’t come under control, then they start looking at things like medications to stop the reflexing or continually wearing a “condom catheter” (a condom-like thingymabob is worn, and it attaches to a tube, which attaches to a leg bag) to catch the leaking, while still doing the ICs as always (in other words, we’re not talking a permanent indwelling catheter, which carries its own problems that I believe I mentioned to you long ago).
The orientation, the nurse evaluation, and the doctor consult used up the entire morning. Gary ate in the cafeteria and I brought my rice and joined him (Gary noted that the cafeteria food – at least today’s – was better than the food brought in trays to the patients’ bedsides).
After lunch came an hour-long evaluation by Gary’s new OT. One thing she brought up is that Alabama’s Vocational Rehab Department should help pay for Gary’s driver evaluation and for any modifications made to a car we already own that would enable Gary to drive it.
She and Gary also went over his goals, and in addition to the transfer and bed mobility ones I mentioned above, he added dressing on his own and bathing (though given his restrictions it is highly unlikely he will meet these goals for a while) – and doing the dishes. Yes, you read that right ;-). He wants to take on his previous chores as much as he can, except for mowing the lawn ;-). (At this point, the OT said many people decided they didn’t want to learn how to do such chores again, and I thought, just who does she think is going to do them? I mentioned this to Gary later, and he said he’d had the same thought, and that it would be very selfish of him to make such a decision. Now you see why I married the guy? ;-))
The OT asked if he was returning to work, so he told her about the plans for that. She then asked if he had any work-related issues, but he said that the people in the math department had taken care of that!
An hour-long PT evaluation followed this, and the one thing they added to the list of goals was working on his balance.
After this I was supposed to get him on the mat and stretch him for a half-hour, but the nurse had told us to use that time to get him prone and off his “area of concern.” Then came a half-hour session of goal setting, where everyone on Gary’s new team got together and Gary was asked to state his goals, even if he’d already gone over them in some of the other sessions. He started by saying his goal was to be as independent as possible, and then it was mostly a repeat of what he’d said to them earlier. The case manager gave him a written list of what they’d come up with from their side (I think they were getting this together during that previous half hour). She told me she was going to give us a copy, so I didn’t need to take notes. That intimidated me into not taking the notes (which means I don’t remember much of what was said), but then we didn’t get a copy – maybe it’s coming later. I think that the only things that hadn’t been specifically mentioned before came from the nurse. She said her goal was to help him get his bladder under control, teach him medicine management (should that become a necessity), and make sure he understood the medical complications that could arise as the result of having an SCI. They also want to know that he can verbalize all the aspects of his care to someone else, in case there is ever the need for someone else besides me to help him with something.
After this I drove back to the apartment to start my dinner. Gary arrived soon after, having taken the bus. I then went off to my next session with a personal trainer, this time with the guy with the rehab and physical therapy background. I’m afraid I wimped out. I’m more tired from this new routine (specifically from the interrupted sleep), and I was afraid to do too much for fear of pushing myself over the edge.
Well, I have much less time now for blog-writing, so I’ll skip writing my workout here. This guy actually had his stuff written out, so I have a record of it for myself.
Well, now I’m going to try to doze before getting up at midnight . . .
August 1, 2006
. . . Ychh, felt sick at midnight from waking up at the wrong part of the sleep cycle. And we rush like mad in the morning to get everything done. As Gary said about 8:15 am as he wheeled out the door for the bus, “This (Day Program) schedule is a bitch. School is going to seem easy compared to this.”
All for now.
posted by Peg Daniels at 5:39 AM
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