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.