Janary 4, 1999 update

Been a long weekend. Su was pretty much stable over the weekend, she slept most of the time I was there, would only wake up when she sensed I might be leaving and then she would get agitated. It was a good time for her to rest up. Meet with the other Co-Medical director on Saturday, he is the internist. I realized that he had to ask the questions since we didn't have an Advanced Medical Directive on file but it still took me back when he asked if I wanted "extra-ordinary" measures taken to revive Suze if it came to that. I couldn't say anything for a couple of minutes, just looked at him in disbelief. Told him that if he didn't move heaven and earth if it came down to it I was going to take it very, very personal.

Monday:
They had her sitting up in a chair for about 45 minutes today, her previous limit was about 15 minutes. Her speech therapist worked out a method of communication that seems to work pretty well for Suze. One finger for YES, two fingers for NO. Beats each of us coming up with our own particular method that would only confuse her. She was able to answer about 60% of the questions that they asked her today using this method. She was definitely more focused and alert when I got there. Read her a bunch of cards and letters she had gotten and she was able to comment yes/no on most of them. Going to try to take her email into her and have her help me sort it out, if nothing else the 1800 messages in her inbox ought to motivate her to get going. :-)

PT did the arm stretch on her right arm and it was pretty bad to watch. She has been guarded on that arm and the biceps muscle is starting to shorten. It was pretty painful for her; and me for that matter; but the alternative doesn't bear thinking about so she is pretty much going to have to work through it. They are considering a splint on that arm to try to counteract the shortening. It left her in a real foul mood and extremely agitated for the rest of the night to the point where they had to give her medicine to calm her down. On the plus side she is off the feed pump and onto a gravity feed 4 times a day. This more closely simulates normal eating patterns (at least for some of us) and is better for her than the continuous feeding.

The Sub Force Med officer is going to continue to track the case to make sure that it comes out okay in the end. Got it set up so that they will give him any info that he wants and he can sit in on the team conferences. An extra set of impartial eyes never hurts, especially when they are qualified.

Not much else to report, looks like VDOT has given up on the median work so traffic there and back is a more reasonable 1 hour commute.

take care all

lawrence