Awareness, Communication, Touch

Tuesday 30 October 2001
7:15 am  Brian's night continued as when I left, although heartrate kept going into 100s. When Dave and Bruce turned him, they discovered a pool of "food" under him. A possible source of discomfort and thus high heartrate? Something to check regularly, as the tube has been pulling out of the port often, since he started moving more. Slept with hands curled up by his face. Seems to be figuring out how to swallow instead of gag. 
(The "food" was the green mixture they fed him through the PEG tube in his belly. We called it "Soylent Green" after the movie of the same name)
10:45 am Spent 2 1/2 hours with Brian, most of it with him in his chair. Helped Nurse Kathy put him in chair, too. He was very active, lifting and waving arms, reaching for monitor (which he stared at a lot first; I explained it to him). Kellie brought in a soft stuffed puppy that looks like her dog, Josie, and Brian smiled when she showed it to him and described it. We held his hands and talked to him. Left puppy in his lap. I spent time alone with him, which is when he started getting very animated. Rubbed his nose twice with right hand, as though to alleviate itch. Explored my hands and arms with his hands. Touched his own chin and reached around to feel the back of his neck and head, then mine (all with right hand). Touched my face several times. Smiles and many attempts to talk. Trying to teach him to nod and shake his head. Will open mouth now upon request. Squeezed Dr. Fennel's hand upon request, and let go of mine when asked. Rosemary with me, with him, till OT Karen came near 10:30. He held both our hands, moved around. Very active! Some quivering in legs with increased activity. Toes spreading, too. HR goes up a bit, 110-120 sometimes - but goes down. Dr. Foster says Dr. Martin (Cardio surgeon) will be in in next couple days and will put in de-fibrillator. Explained to Brian a little. (Looking out) Facing window while in chair. Spam visited and was amazed at news (hadn't talked to her in a while!) She hasn't seen him yet. (Spam and Brian became great friends later) MK called. Brian pointed at/gestured towards drawings and photos of him on wall. Very interested in them.
(Brian was re-entering the world, as an infant would, re-learning how to use his body. Everything was new again, including language)
10:30 pm New schedule beginning: Dave will be with Brian till midnight, then come back 
here. (Cheney House) I will get up in morning and spend most of day at hospital with Brian - or as much as I can, given his schedule, other visitors. Eventually, Dave will be on days,too. This will be better for Brian, us, Marshall and Kellie. Thom Little has offered regular help, too; he is healthy and visited tonight. (Thom had the flu, or maybe pneumonia) 
Brian is worn out from a busy day. In chair 4 hours or so (too much?) and had school visitors this afternoon/evening: Alana, Matt, Vanessa, Bubby. This evening he hugged Marshall! Tonight he mouthed "Mom" (he was in distress, holding my hand) and "I love you" after I did it (said it). he wants to talk very much, and is distressed that he can't.
Tomorrow I will bring in calendar and dry erase board. I will start by showing him October.