What a Fine Day

Friday 2 November 2001
10:20 am  I was with Brian from 8 until a few minutes ago. he is awake and sitting in his chair, working with the OT Karen. Kellie came in about 9:45, and we washed his hair (Kellie did most of it while I held his hand and talked to him). It was fun and sweet; he liked it. We didn't comb his hair, leaving it naturally wavy. It is getting long, curly and reddish. (It used to be dark blond and straight!) Brian helped Nurse Susan brush his teeth! Whenever he spits, he looks at me for "permission"/reassurance. He will cough and spit for me - I tell him I am the cough and spit catcher! He inspected my earrings and necklace today - colorful beads. (He was curious like a very small child, and would inspect items of interest very closely, touching and examining them) I took out an earring for him to hold. He didn't seem to want to be read to, so I spent a lot of time with him letting him hold and squeeze my hand, smiling, looking around. He likes to move his body around. He also rubbed his nose, and reached for a washcloth to wipe his mouth when his teeth were brushed. He also reached to the back of his head when Kellie was washing his hair, to feel (and help?)
The nurse and I both talked to him about today's surgery, and she shaved his chest.
I brought in El Tigre - seemed like the right day for him. He will guard Brian's room. (This was the giant stuffed tiger)
1:50 pm  Brian is going in for surgery now. Dave, Kellie and I stayed with him in pre-op till we had to leave. I held his hand and talked to him while they put in another IV in his right arm for quicker dispensation (quicker than PICC line). We even got a smile out of Brian, when I went back for one more kiss. He was confused and scared, but I tried to reassure him as best I could, and the presence of Dave and Kellie helped. He needed Mom. Now we wait.
10:35 pm  Brian came through the surgery great. Dr. Martin came out at 4:20 to tell us Brian was waking up and everything went well. Dave and I got in to see him around 6 pm. Brian was wide awake, moving around, no post-surgery grogginess at all. Sara Golden and Darcie Baize (childhood friend) visited him; he was insecure at first, kept checking with me, but eventually relaxed and grinned. Tonight when Dave and I visited, Brian wanted my glasses, so I took them off and gave them to him. He put them on sort of upside-down, looking for approving smiles - which he got! (This was classic infant/toddler Brian; I have a photo of him in a pair of blue shades, with them upside-down on his face and a huge grin!) I need to find his shades. He was very active, moving his legs as though he was walking down the street, arms waving, hands grasping. He wanted us to help him take off the wires and the big tube that gives him O2 , and get him out of bed. We told him we'd like to but we couldn't . Dave told him that if he grabbed at things too much, his hands might get tied, and that seemed to calm Brian a bit. He was getting sleepy when I left him with Dave.
Thom and Alana visited.
Robin, Faye, Linda, Butch Filliger (Kellie's Mom), Rosemary, Merrikat called (Merrikat calls every morning).
What a relief to have the ICD installed! What a fine day for Brian.