June 23, 2006
Oops! I did miss naming a person to thank: Narendra Govil also came out to the house to help with the master bathroom. Janet Rogers is sending pictorial updates on the progress being made.
The OT was up first this morning. Gary’s task: to learn to position pillows the way he’ll need to after turning from a prone position (lying on his stomach) to a side position during the night. First he pretended that the exercise mat was his bed and did a transfer onto it from his wheelchair (still helped by the OT, though she mainly helped him maintain his balance, not actually having to do any lifting of him). Next he pretended he was going to go to sleep so had to get himself into a prone position from the seated position he was now in. First he had to get his legs up and get into a side lying position. No problem. Then he was to turn from that position onto his stomach. Now he had a problem. The pillows. He could’ve done this turn if they weren’t there, but they were set up as they would have to be for a proning position (to end up under his chest, above each knee, below each knee extending to above the ankle), and they seemed to get in his way – he couldn’t roll over them. After watching him attempt to heave himself over the pillows several times without success and standing there thinking that going through such a process at bedtime would certainly not be relaxing, I said, well, if this is the position he’s going to start in at night, can’t we “cheat” and have me help him get into this position without him having to do everything himself? The OT said she’d been about to suggest that. So I bent his leg up at the knee, laid that leg over the other straight one, and then gave his hip a little push on the count of three as he swung his arms and raised and followed through with his head to give himself momentum as he turned to the side. Success. Now he pretended it was five, six hours later and he wanted to turn onto his side without my help. Getting onto his side was no problem, but once again the pillows proved to be a stumbling block. He needed to get a pillow or pillows down by his ankles so that they would “float” above the mattress, and when he turned his legs had ended up positioned in such a way that the pillows already down there for the prone position were not in the proper place for side lying. He tried to fold his body over and use a grabber to move the pillows. He tried using a chain loop (a chain of loops of cloth) to hook his foot and thereby move his leg to the proper position. He just wasn’t flexible enough in the legs and hips and shoulders (and, and, and) to be able to do it anyway he tried. The OT decided we needed to work on his flexibility, so she gave us a bunch of stretching exercises to be done twice a day – I say “us,” because I am the one holding his leg in position for the stretch. When he gets his own chain loop to use, he may be able to hold at least some of the stretches on his own, but maybe not all of them, but still he can’t get his leg in the proper position on some of them – at least he hasn’t figured out a way to do so yet. So, we’ll see on that (and we’ll also see if my back can take holding his legs in position).
However, this still left us with the problem of what to do until he gets more flexible (and I have my doubts he’ll ever get much more flexible). We were surprised to find the OT didn’t have any more suggestions for what Gary could do (we thought surely Gary hadn’t been the first to ever have this problem). I had a thought, and told the OT that this was just off the top of my head, but what about little “ankle band pillows” – little pillows or pieces of foam that would wrap just above his ankles, but wouldn’t be tight enough to cause any pressure, and would keep his feet from touching the mattress. Both she and Gary liked the idea, but she said she’d have to check with the skin nurse to see if there was any problem with that.
Gary returned to his room, thirsty and hungry after all this activity. I went to the patient kitchen to get some cups in which to mix his protein drink and on my way back happened to see the skin nurse. I asked her about my idea of ankle band pillows. She said there were such things but they had a tendency to slide out of position. She also said there were such things as waffle boots (I found a pic at http://www.ehob.com/products/foot.html) , but that they were for “old men” and Gary should work on his flexibility and not rely on these other products. I returned to Gary’s room and told him this, but he objectd to her reasoning. He wasn’t convinced that ankle pillows would slip, and if waffle boots would work and there was no medical contraindication to using them, he saw no reason not to use them just because she thought they were a last resort. I said maybe she was afraid if she approved of them then he wouldn’t work on his flexibility and he needs to do that to help in other matters, such as dressing. He said he’d still work on that, but if there was a simple solution to the turning in bed problem it seemed better to take it than to spend a lot of time trying doing it a harder way. “Whatever works,” he said. “Would you rather I wake you up every night to put pillows under me?” he continued.
I saw his point.
The skin nurse came in later to schedule showing me what she wanted me to do for Gary’s flap care over the weekend. She again mentioned that in order to solve the pillow placement problem Gary should work on his flexibility or work at getting his proning up to eight hours so he didn’t have to turn at all. Gary didn’t say anything, but I know she didn’t convince him. ;-)
For an hour in the early afternoon Gary met with another substitute PT, his own PT having taken a long weekend. He was supposed to try out the power-assisted wheels again, but one wheel refused to turn on. So instead, Gary started to learn how to do wheelies. This isn’t for fun (well, I’m sure it can be) but to get over obstructions on the ground – like garden hoses, small tree limbs – or for getting up small stepups to doorways, or for getting out of crevices if the front wheels get stuck in such.
First the PT took his tip bars off of his chair, then she stood behind him with a gait belt attached around his rear axle and tipped him backwards to the balance point (further back than he’d thought it would be and far enough back that I winced and had to restrain the urge to run over and put him upright ;-)). To keep the chair in that wheelie position (front wheels in the air) one must use one’s hands to constantly move the rear wheels a short distance back and forth. He practiced this a number of times. Then she had him practice popping himself up into the wheelie (give a strong pull on the wheels) and trying to balance there. He definitely improved – she said he was a quick learner and another therapist walking by said, yeah, he picks up everything very quickly, which made me puff up with pride (though it has nothing to do with me ;-)) – but neither he nor I could tell how much help she was giving him. Let’s just say he won’t be practicing tip-bar-free wheelies without a therapist behind him, at least for a while ;-)
Finally she showed him how to take his tip bars off and on or how to simply swing them away (he will need to this if there are obstructions he needs to get over but the tip bars don’t allow him enough clearance). Then it was time to go back to the room and soon after that, time to get back into bed. He was ready for it.
The tech hoisted him into bed (I was being lazy ;-)), and then I got him ready so the skin nurse could check his flap. He started laughing and said maybe he should take his gloves (to protect his hands while he does all that turning of the wheels of his chair) and his elbow pads off. He did look a rather funny sight leaving them on in his current state of undress ;-).
Between the two of us we got him on his side and properly pillowed – he can do enough turning and maneuvering around in the bed now that I don’t have to exert a lot of strength to help. The skin nurse came and checked him out. What she is “working on” is the third side of his flap, which didn’t close in a nice seam like the other two sides but rather stayed slightly open and scabbed over. The scabs have dropped off, so that third side looks like a “channel,” with definite “walls” on each side. She wants to get rid of the walls so the skin heals over smoothly. To do that she uses silver nitrate (brushed on with a little stick) to burn the top inner edge of the wall. The result is supposed to be that the skin breaks down and then heals back up smoothly. Then she uses the cadillac version of neosporin, xenaderm, on the skin around the wound. Finally she uses something called acuzyme (I read an ingredient of papain, so think meat tenderizer ;-)), which she sprays on a topical wound dressing and then sticks it on a couple parts of the wound that still need debriding. Finally she tapes on gauze over the wound.
She doesn’t work on the weekends, and she thought that rather than having to round up and explain the process to each different day nurse Gary would have over the weekend, I could do it once a day (under nurse’s supervision) if I’d agree to that, which I did. (She’d let me finish each part of the task after she had shown me what to do, so I was sure I could do it. And I had her write out the steps so I’d be sure to do the things in the proper order.)
A little later Joe called with an update on the house, but I had to dash off to the chiropractor so I gave the phone to Gary. I’m sure I don’t remember everything Gary told me later about the conversation, but I do know progress was being held up because the dumpster wasn’t delivered, that the plumber will be coming out to move the drain in the shower from the front to the middle, that new window coverings have been ordered for all downstairs rooms except the kitchen, and and that we put in an order to have a detached garage built for us. I probably won’t recognize the house when we return. Or maybe I won’t notice the difference ;-)
During the evening visit I stretched Gary. It wasn’t easy in the bed – I sunk into that air mattress – and I worried about my back. Then Gary remembered the bed could be made firmer, so we pumped it up to maximum level. Then it was more comfortable for me, but not for him. He only had to stand it for about ten minutes, though. If he can’t do all these stretches himself at home, we are going to have to do them on a firm surface, like maybe that futon couch.
So, all in all, we are gradually taking over more and more of the nurses’ and therapists’ tasks, becoming slightly less dependent of them. But it’s good to know they are there!
Oops! I did miss naming a person to thank: Narendra Govil also came out to the house to help with the master bathroom. Janet Rogers is sending pictorial updates on the progress being made.
The OT was up first this morning. Gary’s task: to learn to position pillows the way he’ll need to after turning from a prone position (lying on his stomach) to a side position during the night. First he pretended that the exercise mat was his bed and did a transfer onto it from his wheelchair (still helped by the OT, though she mainly helped him maintain his balance, not actually having to do any lifting of him). Next he pretended he was going to go to sleep so had to get himself into a prone position from the seated position he was now in. First he had to get his legs up and get into a side lying position. No problem. Then he was to turn from that position onto his stomach. Now he had a problem. The pillows. He could’ve done this turn if they weren’t there, but they were set up as they would have to be for a proning position (to end up under his chest, above each knee, below each knee extending to above the ankle), and they seemed to get in his way – he couldn’t roll over them. After watching him attempt to heave himself over the pillows several times without success and standing there thinking that going through such a process at bedtime would certainly not be relaxing, I said, well, if this is the position he’s going to start in at night, can’t we “cheat” and have me help him get into this position without him having to do everything himself? The OT said she’d been about to suggest that. So I bent his leg up at the knee, laid that leg over the other straight one, and then gave his hip a little push on the count of three as he swung his arms and raised and followed through with his head to give himself momentum as he turned to the side. Success. Now he pretended it was five, six hours later and he wanted to turn onto his side without my help. Getting onto his side was no problem, but once again the pillows proved to be a stumbling block. He needed to get a pillow or pillows down by his ankles so that they would “float” above the mattress, and when he turned his legs had ended up positioned in such a way that the pillows already down there for the prone position were not in the proper place for side lying. He tried to fold his body over and use a grabber to move the pillows. He tried using a chain loop (a chain of loops of cloth) to hook his foot and thereby move his leg to the proper position. He just wasn’t flexible enough in the legs and hips and shoulders (and, and, and) to be able to do it anyway he tried. The OT decided we needed to work on his flexibility, so she gave us a bunch of stretching exercises to be done twice a day – I say “us,” because I am the one holding his leg in position for the stretch. When he gets his own chain loop to use, he may be able to hold at least some of the stretches on his own, but maybe not all of them, but still he can’t get his leg in the proper position on some of them – at least he hasn’t figured out a way to do so yet. So, we’ll see on that (and we’ll also see if my back can take holding his legs in position).
However, this still left us with the problem of what to do until he gets more flexible (and I have my doubts he’ll ever get much more flexible). We were surprised to find the OT didn’t have any more suggestions for what Gary could do (we thought surely Gary hadn’t been the first to ever have this problem). I had a thought, and told the OT that this was just off the top of my head, but what about little “ankle band pillows” – little pillows or pieces of foam that would wrap just above his ankles, but wouldn’t be tight enough to cause any pressure, and would keep his feet from touching the mattress. Both she and Gary liked the idea, but she said she’d have to check with the skin nurse to see if there was any problem with that.
Gary returned to his room, thirsty and hungry after all this activity. I went to the patient kitchen to get some cups in which to mix his protein drink and on my way back happened to see the skin nurse. I asked her about my idea of ankle band pillows. She said there were such things but they had a tendency to slide out of position. She also said there were such things as waffle boots (I found a pic at http://www.ehob.com/products/foot.html) , but that they were for “old men” and Gary should work on his flexibility and not rely on these other products. I returned to Gary’s room and told him this, but he objectd to her reasoning. He wasn’t convinced that ankle pillows would slip, and if waffle boots would work and there was no medical contraindication to using them, he saw no reason not to use them just because she thought they were a last resort. I said maybe she was afraid if she approved of them then he wouldn’t work on his flexibility and he needs to do that to help in other matters, such as dressing. He said he’d still work on that, but if there was a simple solution to the turning in bed problem it seemed better to take it than to spend a lot of time trying doing it a harder way. “Whatever works,” he said. “Would you rather I wake you up every night to put pillows under me?” he continued.
I saw his point.
The skin nurse came in later to schedule showing me what she wanted me to do for Gary’s flap care over the weekend. She again mentioned that in order to solve the pillow placement problem Gary should work on his flexibility or work at getting his proning up to eight hours so he didn’t have to turn at all. Gary didn’t say anything, but I know she didn’t convince him. ;-)
For an hour in the early afternoon Gary met with another substitute PT, his own PT having taken a long weekend. He was supposed to try out the power-assisted wheels again, but one wheel refused to turn on. So instead, Gary started to learn how to do wheelies. This isn’t for fun (well, I’m sure it can be) but to get over obstructions on the ground – like garden hoses, small tree limbs – or for getting up small stepups to doorways, or for getting out of crevices if the front wheels get stuck in such.
First the PT took his tip bars off of his chair, then she stood behind him with a gait belt attached around his rear axle and tipped him backwards to the balance point (further back than he’d thought it would be and far enough back that I winced and had to restrain the urge to run over and put him upright ;-)). To keep the chair in that wheelie position (front wheels in the air) one must use one’s hands to constantly move the rear wheels a short distance back and forth. He practiced this a number of times. Then she had him practice popping himself up into the wheelie (give a strong pull on the wheels) and trying to balance there. He definitely improved – she said he was a quick learner and another therapist walking by said, yeah, he picks up everything very quickly, which made me puff up with pride (though it has nothing to do with me ;-)) – but neither he nor I could tell how much help she was giving him. Let’s just say he won’t be practicing tip-bar-free wheelies without a therapist behind him, at least for a while ;-)
Finally she showed him how to take his tip bars off and on or how to simply swing them away (he will need to this if there are obstructions he needs to get over but the tip bars don’t allow him enough clearance). Then it was time to go back to the room and soon after that, time to get back into bed. He was ready for it.
The tech hoisted him into bed (I was being lazy ;-)), and then I got him ready so the skin nurse could check his flap. He started laughing and said maybe he should take his gloves (to protect his hands while he does all that turning of the wheels of his chair) and his elbow pads off. He did look a rather funny sight leaving them on in his current state of undress ;-).
Between the two of us we got him on his side and properly pillowed – he can do enough turning and maneuvering around in the bed now that I don’t have to exert a lot of strength to help. The skin nurse came and checked him out. What she is “working on” is the third side of his flap, which didn’t close in a nice seam like the other two sides but rather stayed slightly open and scabbed over. The scabs have dropped off, so that third side looks like a “channel,” with definite “walls” on each side. She wants to get rid of the walls so the skin heals over smoothly. To do that she uses silver nitrate (brushed on with a little stick) to burn the top inner edge of the wall. The result is supposed to be that the skin breaks down and then heals back up smoothly. Then she uses the cadillac version of neosporin, xenaderm, on the skin around the wound. Finally she uses something called acuzyme (I read an ingredient of papain, so think meat tenderizer ;-)), which she sprays on a topical wound dressing and then sticks it on a couple parts of the wound that still need debriding. Finally she tapes on gauze over the wound.
She doesn’t work on the weekends, and she thought that rather than having to round up and explain the process to each different day nurse Gary would have over the weekend, I could do it once a day (under nurse’s supervision) if I’d agree to that, which I did. (She’d let me finish each part of the task after she had shown me what to do, so I was sure I could do it. And I had her write out the steps so I’d be sure to do the things in the proper order.)
A little later Joe called with an update on the house, but I had to dash off to the chiropractor so I gave the phone to Gary. I’m sure I don’t remember everything Gary told me later about the conversation, but I do know progress was being held up because the dumpster wasn’t delivered, that the plumber will be coming out to move the drain in the shower from the front to the middle, that new window coverings have been ordered for all downstairs rooms except the kitchen, and and that we put in an order to have a detached garage built for us. I probably won’t recognize the house when we return. Or maybe I won’t notice the difference ;-)
During the evening visit I stretched Gary. It wasn’t easy in the bed – I sunk into that air mattress – and I worried about my back. Then Gary remembered the bed could be made firmer, so we pumped it up to maximum level. Then it was more comfortable for me, but not for him. He only had to stand it for about ten minutes, though. If he can’t do all these stretches himself at home, we are going to have to do them on a firm surface, like maybe that futon couch.
So, all in all, we are gradually taking over more and more of the nurses’ and therapists’ tasks, becoming slightly less dependent of them. But it’s good to know they are there!
posted by Peg Daniels at 10:23 AM
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