[11-13-08] Mom says "Different day, more of the same"

WBC 1.3
HCT 290
PLT 11,000

Temperature: Has been up to 101.6 on Austin's thermometer. Doctors don't seem stressed about the fever. They think it could be white cells fighting an infection.

Today is mostly a repeat of yesterday. Austin's mouth is still very painful. He has two especially bad sores under his tongue. The Fentanyl has been increased (50Mcg to 75Mcg) on as needed basis but Austin tries not to push the clicker so he can stay alert. The increase in Fentanyl HAS affected his concentration. A few hours ago he was standing with a vacant expression on his face, body swaying; I called his name and he jerked to attention. He says he was daydreaming, I think he zoned out! I need to play him a board game tonight so maybe I can win for the first time!! As I read this to Austin he says again "I really was dreaming".

What I find strangest is that Austin will lay down for a nap and wake up thinking it has been 30 minutes later - most of the time it is about 1 minute! He does that all day long. When he wakes up, he feels rested.

The other strange thing is that his body jerks him awake often. His oxygen monitor often goes off for too little oxygen, so that Austin now makes it a habit to put on the oxygen tube before laying down.

We are attempting to watch the movie "BRAZIL". We are often interrupted by nurses, machines going off, bathroom needs etc.

Indicators of Austin's pain level:
   1. Austin talks very slow trying not to move his lips or tongue
   2. It is worse when Austin starts typing on the computer screen         to communicate.
   Signs it is worse:
      Austin will hold his hand to his mouth, palm in, BUT when the pain really gets bad, he will hold the back of his hand to his mouth and his hand shakes---then he looks for his clicker!
      When Austin stops obsessively rinsing with saline water....then even that hurts too much. Austin has mentioned that the saline is not as effective as before. Previously, Austin would rinse with the saline and could talk for a few sentences - now it is maybe a few words if we are lucky.