Such a Day

Friday 26 October 2001
7:32 am  Another couple of big coughing fits in the night. After one, when Dave was there, Brian's legs went into spasms (lower body). Nurse Ida gave Brian ativan instead of morphine: he seemed to be anxious, not in pain. RT Scott suctioned back of throat because B seems to be reluctant to swallow.
9:05 pm Jesse and Jamie just left with Kellie.
Brian had pphysical and occupational therapy today. His PT is Cindy; she worked his legs this morning. He sat in the "Cadillac Chair" twice today. (A very elaborate wheel chair) This morning he was with Marshall and I, and got to look out the window. This afternoon he tried to sit up higher in the chair by himself (it's tilted at 40 degrees). ( At this time, Brian was still very floppy, with no muscle tone to speak of. He was also frighteningly skinny, with bones protruding everywhere) Brian smiled at Jesse, and Jesse and Jamie think (as do I) that he is trying to speak. When Jesse and Jamie saw him before they left, he was asleep. Foster told me this morning that Brian has a bacterial infection in his blood, which will be treated aggressively with a new round of antibiotics.
12:30 am (10-27-01) BRIAN SMILED AT ME!!! I walked in the room at 7:30. He was staring at his Pink Floyd banner. I said, "Hi Brian, it's Mom", he turned to me, and gave me a big, closed-mouth smile! His whole face lit up, eyes sparkling. We sat and smiled at one another for a long time, and did it several more times before about 11:30, when he was tired and ready to sleep. I cried many happy tears. He was alert quite a bit, looking around, trying to sit up, lifting his arms. Sometimes he looked angry; other times I knew he was trying to talk. As always, I explained about his vocal chords. And I told him his hands were tied to keep him safe.
Heartrate in 80s mostly. Breathing ENTIRELY on his own, w/35% humidified O2 . Coughing well, on his own.
Chris (Newton - school friend) and Max visited late (saw Brian). Marc and Alana there, along with Dave.
Barb and Dave due tonight (my Dave's sister and her husband).

A Mother's Words (my journal)
BRIAN SMILED AT ME, for long stretches, many times tonight! 
We smiled together and I cried happy tears!
Such a day.
Brian's first night off the ventilator. And he was up in a special chair, the "Cadillac Chair", twice today! (Friday)     
Saturday  10-27-01   12:40 am