Hello All—
Kari had her second set of casts put on her arms Monday and the process seems to be going very well. The whole thing should be done on Dec. 12th or 19th, which puts our release date on the 20th or 27th, which is more in line with where we were thinking before. Maybe we’ll be home for Christmas, maybe not—it doesn’t really matter to me, I just want to go home sometime. We’ve also found some nurses and techs that we like on this side and that has made life more enjoyable. We still miss our old staff, but many of them have come by to visit, which has been nice. The nurse today and the tech tonight talked a lot about the different things they need to teach us before we go home. After being in limbo for so long it’s sort of scary to think that we’ll be going home in 3-4 weeks. We left California on July 13th, and while I’ve been back for a total of 6 days, Kari has been gone now for 140. There is so much to do to get ready to come back. My biggest concerns right now are that we’ll have all our equipment on time, that the apartment management will help us modify the bathroom to put in a roll-in shower, and that we’ll qualify for Medi-Cal and In Home Supportive Services (IHSS). So far, we’ve been too “rich” to qualify for anything but disability, but I’ve learned a little about the process and am going to re-apply. I’m not sure what we are going to do about home health care if we don’t get IHSS. The system is such that I’d be better off making a lot less money. Anyways, pray for a softening of heart for the manager of our apartment, for quick processing of all our equipment orders, and for favor with the person that reviews our Medi-Cal and IHSS applications.
After being sick for about the last week, Kari had a better day today, but in the evening had a lot of stomach pain and spasms as well as extremely high blood pressure. At one point it was 203/97. The doctor wasn’t exactly sure what caused it because it didn’t look like autonomic dysreflexia, so he prescribed some new medicine. The best news, though, is that Kari got her trache tube removed today! It looked pretty weird when they took it out because there was just a hole in her neck. I showed it to Kari in the mirror before they bandaged it up and she thought it looked weird too. Because she had her trache for so long, it may take up to 3 weeks to totally heal. Tomorrow she is having her vena cava filter (helps prevent blood clots) removed, and after that the only thing left to go is to take out her g-tube, which goes into her stomach. I still can’t believe that we’re actually leaving in less than a month. Part of my brain is telling me that it won’t happen anyways and that something else will come up, but I’m trying to be optimistic. We are still on for another month this summer, but can’t wait to get back home and get back to work and school.
P.S. Gage people be proud—I played our tech a recording of my orchestra and she was floored by how good it was.
Wednesday, November 30, 2005
Friday, November 25, 2005
Update 11/25
Hello All—
It’s been a long time since I’ve written—two weeks exactly, and a lot has happened. For starters, the feeling that has returned to Kari’s feet and legs is still there, but it is not normal or consistent sensation. I still can’t tell if it is more of a “phantom” type of feeling that works sort of like nerve pain, or if it is more just reflexes and spasticity, or if it is regular feeling, but because of the injury it doesn’t feel normal. Sometimes when I have her close her eyes she can tell me where I touched, but sometimes she gets it wrong, and sometimes she tells me I’m touching her when I’m not at all. At any rate, the feeling isn’t as painful as it was when it first started coming back. On Monday, Kari started the process of casting her arms to try to straighten them. During the 40 days that Kari was out of it mentally, the spasms in her arms were so bad that they becamed locked at about a 90 degree angle with her palms facing up. The muscles and tendons had gotten so tight that it was impossible to even try to stretch them. The point of the phenol injections that she had last Thursday was to try to relax her arms so they could start stretching them out. The casts that they put on are plaster and go from her shoulder to her wrist on each arm. The bottom of the cast is cut out so that in PT and OT her arms can still be stretched, but the top of the cast prevents her from flexing at the elbow. The people doing the casting say it will take 4-5 weeks to complete the process. Of course originally they told us 2-3 weeks—I think the person doing the casting took about 5 minutes to say 4-5 weeks because she knew we were hoping to go home sooner. Kari had to ask her 3 times until she got a straight answer! I’m beginning to think its impossible to get a straight answer from anyone around here. Anyways, the 4-5 week timeline puts our release date to somewhere around January 5th-10th, which is about 7 weeks past our original release date. Even with all the extra time, we will still probably have to come back to the hospital this summer for another month to finish all the things that they didn’t have time to do while she was here. It’s normal to come back for a re-evaluation in 6months, ours will just be longer. I’m actually glad that they are planning to do it that way, because the both of us are starting to just hate it here. Even at a good hospital like Craig, there are people that don’t know what they’re doing, or just don’t listen very well, or have really bad bedside manner and are just annoying to deal with. I think that the doctors and therapists are good most of the time, but the nurses and techs are hit and miss—some are great, but sometimes you can get one that isn’t.
The other big thing that happened is that on Tuesday we moved over to the east side. It’s nice to have everything all in one place and to not have to go back and forth between the apartment and her room. It’s also nice for visitors because it isn’t so cramped in here anymore. There are a couple of drawbacks, though. I was getting pretty used to my nice spacious apartment and bed, and here there is only a sleeper sofa, no stove and only small fridge. It’s pretty cramped with all of our stuff. We’ve gotten so many things and brought so much stuff here because of the long stay, that it doesn’t really all fit in the room. Also, other than the room, its really not different from the other side, so there isn’t a lot of privacy, (we can’t lock the door) and people are always coming in and out—not any time to watch TV in your underwear! Okay—I think I was just a little spoiled having my own place for 4 months. Hopefully the staff here will learn Kari’s needs quickly—its been difficult to leave the staff over at the West side (at least the good ones.) From first impressions, the staff here seems not as good as the other side, but hopefully it’s just because they haven’t had her before and that it will get better the longer we are here. Still though, I’m glad to be over here even if there are a lot of annoyances to moving. It seems like a step in the right direction—if not medically, at least in environment and attitude for Kari.
Kari spent Thanksgiving and the night before throwing up and having “the runs” until the after noon. It was the first time she had stayed in bed all day for a while. The test for “c-diff” the stomach infection that she’s had now three times came back positive, and its been causing her a lot of pain and cramping in her stomach. She seemed to feel better last night and this morning, though, so hopefully she’ll be over it fast. We are cooking Thanksgiving dinner today in a special room that they have for families to entertain here. My mom and Bryan flew out yesterday and our friends Nate and Joy Cox are here from St. Charles visiting too. Anyways—I gotta go to the grocery store—hope to see you soon.
Aaron.
It’s been a long time since I’ve written—two weeks exactly, and a lot has happened. For starters, the feeling that has returned to Kari’s feet and legs is still there, but it is not normal or consistent sensation. I still can’t tell if it is more of a “phantom” type of feeling that works sort of like nerve pain, or if it is more just reflexes and spasticity, or if it is regular feeling, but because of the injury it doesn’t feel normal. Sometimes when I have her close her eyes she can tell me where I touched, but sometimes she gets it wrong, and sometimes she tells me I’m touching her when I’m not at all. At any rate, the feeling isn’t as painful as it was when it first started coming back. On Monday, Kari started the process of casting her arms to try to straighten them. During the 40 days that Kari was out of it mentally, the spasms in her arms were so bad that they becamed locked at about a 90 degree angle with her palms facing up. The muscles and tendons had gotten so tight that it was impossible to even try to stretch them. The point of the phenol injections that she had last Thursday was to try to relax her arms so they could start stretching them out. The casts that they put on are plaster and go from her shoulder to her wrist on each arm. The bottom of the cast is cut out so that in PT and OT her arms can still be stretched, but the top of the cast prevents her from flexing at the elbow. The people doing the casting say it will take 4-5 weeks to complete the process. Of course originally they told us 2-3 weeks—I think the person doing the casting took about 5 minutes to say 4-5 weeks because she knew we were hoping to go home sooner. Kari had to ask her 3 times until she got a straight answer! I’m beginning to think its impossible to get a straight answer from anyone around here. Anyways, the 4-5 week timeline puts our release date to somewhere around January 5th-10th, which is about 7 weeks past our original release date. Even with all the extra time, we will still probably have to come back to the hospital this summer for another month to finish all the things that they didn’t have time to do while she was here. It’s normal to come back for a re-evaluation in 6months, ours will just be longer. I’m actually glad that they are planning to do it that way, because the both of us are starting to just hate it here. Even at a good hospital like Craig, there are people that don’t know what they’re doing, or just don’t listen very well, or have really bad bedside manner and are just annoying to deal with. I think that the doctors and therapists are good most of the time, but the nurses and techs are hit and miss—some are great, but sometimes you can get one that isn’t.
The other big thing that happened is that on Tuesday we moved over to the east side. It’s nice to have everything all in one place and to not have to go back and forth between the apartment and her room. It’s also nice for visitors because it isn’t so cramped in here anymore. There are a couple of drawbacks, though. I was getting pretty used to my nice spacious apartment and bed, and here there is only a sleeper sofa, no stove and only small fridge. It’s pretty cramped with all of our stuff. We’ve gotten so many things and brought so much stuff here because of the long stay, that it doesn’t really all fit in the room. Also, other than the room, its really not different from the other side, so there isn’t a lot of privacy, (we can’t lock the door) and people are always coming in and out—not any time to watch TV in your underwear! Okay—I think I was just a little spoiled having my own place for 4 months. Hopefully the staff here will learn Kari’s needs quickly—its been difficult to leave the staff over at the West side (at least the good ones.) From first impressions, the staff here seems not as good as the other side, but hopefully it’s just because they haven’t had her before and that it will get better the longer we are here. Still though, I’m glad to be over here even if there are a lot of annoyances to moving. It seems like a step in the right direction—if not medically, at least in environment and attitude for Kari.
Kari spent Thanksgiving and the night before throwing up and having “the runs” until the after noon. It was the first time she had stayed in bed all day for a while. The test for “c-diff” the stomach infection that she’s had now three times came back positive, and its been causing her a lot of pain and cramping in her stomach. She seemed to feel better last night and this morning, though, so hopefully she’ll be over it fast. We are cooking Thanksgiving dinner today in a special room that they have for families to entertain here. My mom and Bryan flew out yesterday and our friends Nate and Joy Cox are here from St. Charles visiting too. Anyways—I gotta go to the grocery store—hope to see you soon.
Aaron.
Saturday, November 19, 2005
Feet
It's very early in the morning, but I think I'll share something I've hesitated to share since it happened. In short, this afternoon as Kari's legs were being stretched, she actually felt her muscles stretching, and all evening has had feeling returning to her rear end, parts of her legs, and especially to her feet. Though the feelings are still quite spotty, what's come back isn't just feeling pressure either. She can feel temperature and specific touch. I can scratch her feet lightly, even through socks, and she can tell where--and, well, it tickles.
Of course, I hesitated to share this because I didn't want to get up any false hopes. It might go away tomorrow. More important, feeling returning doesn't mean that any more movement or function will return to her legs. It's a necessary condition, but NOT sufficient. Yet everyone else here is happy, including nurses and doctors. Some are ecstatic, flashing thumbs up everywhere and saying over and over, "This is a good thing, girl! A good thing!" So I figured we ought to join them. You don't want to let your guard against false hope keep you away from hoping and being thankful, and sometimes it does. It's too complex to get into here, but outside of really obvious instances, I sometimes think the distinction between false and real hope isn't ever very clear anyway.
Also, I thought how this shows how we can both hope and still be pulled down by the gritty realities of things. "This is really scary," Kari said. "It's so weird to feel my feet again." Though she was so happy and we called Aaron as soon as we could, the reality is that regaining feeling has made her much, much, much, much more uncomfortable physically. Her legs and feet hurt a lot, burning and aching as I described in the last post. She's become hyper-sensitive to the touch, and the new feelings set off spasms much more easily. It's almost impossible to feel her whole lower body, especially her legs, is ever positioned right, and it's doubly, triply frustrating to feel them and not be able to move them. "I just have to move them; they hurt so much," she has said over and over. Yet, of course, she can't move them. Tonight the pain and frustration has made it hard to get to sleep again, and her fear level is spiking, because she and everyone knows what pain and lack of sleep did to her for six weeks. It's now past 2:00 a.m. and she's kept tossing and turning and moaning. So out here we are at it again: rejoicing and being truly thankful on the one hand, yet feeling reigned in by the minute by minute realities of pain and frustration and fear. Sometimes I've thought that if we were really thankful we could just rise above those other things easily, but that doesn't seem right and certainly not real. Better than talking about false hope might be distinguishing between easy and hard hope, or even cheap and costly hope, somewhat like when Dietrich Boenhoeffer (sp?) distinguished between cheap and costly grace in "The Cost of Discipleship." The first, he said, was the real enemy of the church. As always, we covet your prayers.
--Richard R. Guzman
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