Update 10/5

Hello All—

Some more ups and downs the last few days.  Monday and Tuesday were basically good days.  Kari got up and went around in her wheelchair to therapy and to eat, which was more than we were expecting after the weekend.  She was coherent and able to speak most of the time and only mixed up her words when she got really tired.  The big problem is that she did not sleep very much the last 7 days.  She got as little as none, and as much as 3-4 hours a night broken up into hour or hour and a half intervals.  She is so exhausted that she can’t stay awake, but so wired from all the medication and full of anxiety and worrying that she cannot sleep.  Yesterday, she tried to drive her wheelchair back into the room and she messed up and rammed into the door.  With the breath control wheelchairs, they keep moving until you give them the stop command, so the chair’s front wheels lifted up into the air as it kept pushing into the door.  When I put the chair in reverse, it slammed down onto the ground and Kari’s head (not in the collar at the time) bounced forward and back pretty hard.  We don’t think she hurt herself at all, but it gave her a pretty good scare, and they took x-rays this afternoon to make sure there was no damage done.   This morning, though we had another scare.  When I walked in, Kari had just woken up and she did not recognize me again.  I can’t tell you how scary that is.  I was leaning over her bed trying to talk to her and she turned to her mom and said “I don’t know who that man is, but he sure is handsome.”  I showed her pictures of her and I and she asked me who the girl in the picture was and said that the boy looked like me.  After getting out the mirror, and talking with her for about a half hour, she eventually came to and was normal again.

She has still been having a great deal of pain from all the spasms.  I’m not sure if they are getting any better, but her muscle tightness seems a bit less.  Even though she slept through it, she was able to move around in therapy a little on Monday and Tuesday.  Today she was doing a bit worse and we had to cancel her appointment with the technology clinic and other therapists.  Based on the fact that she still can’t go to sleep, even with the heavy doses of pain medication and muscle relaxers, the doctors have decided to try a new drug, Risperdal.  Kari mind hasn’t really allowed her to sleep because she can’t stop thinking about things.  She will be almost asleep and then will pop her eyes open and start talking about some random thing that pops into her head.  Risperdal works by blocking chemicals in the brain that help us think fast.  The hope is that will allow her to get some good sleep and break the cycle of pain, anxiety, panic, and restlessness.  They expect her to come out of it by next week.  Anyways, Kari has been asleep the last 4 hours, but she is awake now because she had to be turned.  Hopefully, she’ll go back to sleep for the rest of the night.   Anyways, I’m going to go to bed.  I can’t wait to come home.

Shalom.

Aaron.