Secure and Peaceful

Wednesday 31 October 2001  Halloween
8:15 am  Brian is sound asleep, so I am just sitting in his room. I will do calendar, etc, later. He is pale in the morning light. 
Slept well. Is on and anti-depressant called trazidone as of Monday night. Current HR is 85. He is breathing on his own and O2 sat is 95%. Still getting humidified O2 at 40% (it has been varying 30-40%).
It is wonderful to know that he is in a real sleep, not a coma-sleep. 
X-rays indicate left lung is finally open. Fennel wants one more night on vent. Could move to 3 West floor or elsewhere early next week!
10:45 am  Spent 2 hours with Brian. Marshall came in. We helped Nurse Kathy move him into chair. He is still sleepy, not much interaction. I washed his face a bit, massaged Vitamin E lotion into his hands and feet. The foot massage put him back to sleep. 
Dr. David Marin came in to discuss de-fibrillator. Very compassionate, gentle man - another tall, skinny, competent , intelligent cardiac doctor. He wants to put in de-fibrillator tomorrow or Friday. Will be done in OR, with anesthesia through trach. Insert under skin on left side of upper chest. Wire (like narrow feeding tube)goes through vein into heart. To test it they must fibrillate heart: 1% chance of mortality, because hypertrophic myopathic hearts "notoriously difficult to fibrillate". Other wise, should be safe, easy, and protective. Martin asked a lot of questions about Brian's current condition, and expressed concerns that B can't participate in decision. Bottom line is that Brian wants as normal a life as possible, and this device can save his life. Foster & Martin think Providence Rehab next week. 
OT Karen came in at ten, so Marshall and I left. Brian was till trying to doze. Karen was going to brush his teeth. She works with him 30 minutes. Said the usual procedure with rehan is to set up a very strict daily schedule.
Merrikat and Jamie called. Jesse is doing better; life getting more normal.
2:35 pm  I went in to see Brian again close to noon. Stayed an hour. He was still in chair, didn't seem to want company until I indicated I'd leave if he didn't want me there. Then he became very engaged, looking at me, trying to talk, holding my hand. Still tired. I showed him calendar, with dates written in. Pointed out Homecoming (October 6th), the day we saw Marilyn Zornado's film (October 7th), the day of the attack (6,7,8). I showed him all the days  between then and today, and he looked disturbed at the vast space. I explained that it looked like a long time, but that he'd been working hard and getting better.
The RT was talking about her daughter in Spain, and Brian watched intently. I mentioned that he had gone to Spain this summer and he looked at me, eyes wide, as I said, "Remember Barcelona, Madrid, the Prado, the beautiful box you brought me?" Definite recognition - I try often to issue forth memories, from the recent and far past. 
(He never has remembered Spain, or anything about that trip except perhaps the girl he met)
I helped Kathy and another nurse move Brian back into bed. He was a little scared, because we moved him quickly, but settled easily. I put on a cd of Beethoven and he nodded right off. Secure and peaceful.
Brian is getting thin. Bones protruding.
10:50 pm Brian hugged Dave and mouthed "Alana" tonight. He was tired all day, slept a lot. Hugged Marshall goodnight. Was very subdued when I went in to say "goodnight". We held hands and stared into one another's eyes. I stroked his head gently. When I told him he could close his eyes and sleep, he did.
He looked gaunt and hollow-eyed tonight.
De-fibrillator Friday morning. I hope he's strong enough.
HR 69-70 tonight. On vent, w/30% O2. Dave is with him.
Jamie called; we talked 30 minutes.
Mary and Ali visited.
Faye called. I called Leinani (Greensprings friend).

October 31, 2012
Time was a puzzlement to Brian for quite a while. It still is, actually.
The de-fib surgery scared me. It still does; he has had it replaced twice. Another one is due in a year or so.