Movement and Bedtime Stories

October 24, 2012
I want to mention that Nurse Penny was remarkable. She was compassionate, competent, totally professional, stern when necessary, and always had Brian's best interests at heart. I will always remember her fondly.

Wednesday 24 October 2001
7:45 am  Brian had a quiet night. Taken off ventilator at 5 am to breathe on his own. Has a "mask" over trach. This will be done periodically; if it gets too hard for him, they'll put him back on the vent.
Time to start inquiring about physical therapy.
9:30 am  I was with Brian about an hour. Rubbed his hands and feet and he woke up, found me with his eyes. I talked to him, looked him in the eyes. He turned his head to Penny when she said his name. He lifted his left arm voluntarily, slowly, when I was on his right side talking to him. He seemed to be starting to cry when he first woke up. Eyes open, looking around.
Dr. Solomon, head of rehab, came in. Will have people start working with him. Also start giving him a medication that can help waking. Works with dopamine (natural chemistry). Name: ammantadine. Dr. Sullivan is concerned at length of time it has taken Brian to get this far. Not good for overall prognosis. But also says that Brian's youth in his favor, and there are no predictions. Compassionate and realistic. Long haul. Still the possibility that he will come no farther. Or improve hugely.
9:39  Fennel and Foster examining him.
6:10 pm  I visited Brian 4:15 - 5 pm. He was tired, though his eyes opened quite a bit. Marshall and Penny moved his bed so he can look out the window. He can also look directly at his wall of posters, art, cars. 
The trach is not oozing as much, but Brian's neck is a bit irritated/red/sore-looking. His upper lip is less swollen. Brian had brief sessions with a Physical Therapist and Occupational Therapist. He looked in the PT's eyes, she asked him to squeeze her hand, he closed his eyes 10 seconds - and squeezed! His flexibility and muscle tone are good.
(Prior to all this, Brian was lifting weights and was in great physical shape, though he was unable to do any cardio exercise due to the heart condition)
Alana visited Brian and Bubby was with her, in Waiting Room. Penny let Dan Golden and Ian visit. (Bubby was another female classmate)
9:15 pm  Talked to Jesse and Jamie. They'll be here Friday. Linda also called.
Kellie visited Brian and asked him to squeeze her hand. 30 seconds, and he did! He also blinked his eyes for the nurse two different times. (He wasn't blinking at all, just opening, gazing or looking around or staring, then closing his eyes)
9:30 pm In Brian's room. Sleeping peacefully. Back on vent. Heartrate 87 (average); O2 absorption 95%. Has been on 35% O2 today. 
Neck still red around trach.
Hands restrained because he flipped himself over on left side, throwing right leg nearly off bed!
He was mostly quiet during my time with him. Eyes open, gazing, then slowly the lids would drop. he moved some, especially throwing his right leg over, twisting his body. He seemed angered by the hand restraints. 
I read him Goodnight Moon.   12:45 am

This was the beginning of regular bedtime stories from childhood. It was so much like being with the infant Brian at first that it seemed natural to read to him this way. It was soothing, with the lights low, and the ICU relatively quiet. It was a sweet time, as he woke up more and became more responsive. Our mother and son time. Bringing Brian back time.