Re-Birthing

Wednesday, 17 October 2001 
7:35 am  Brian had a quiet night, except for a heartrate up to 110. When Mom left his heartrate was down to around 96 and he was sleeping. As the night progresses, it gets higher (heart meds wearing off?) Some coughing overnight. Still on antibiotics. Jamie called at 7:40 am, Mom talked to her. Aunt MK called at 7:50 am; Mom talked to her. 
8:25 am I just visited him. Got cleaned up from bowel movement (3 last night). Heartrate about the same. Liked having me stroke brow. Splints off right now. Very relaxed; was turned and no posturing. Dr. Fennel in right now doing tests. No drugs. EEG scheduled today.
("Mom" is me. "Dad" is Marshall. The splints were to keep his ankles and feet from turning inward)
10:10 am Fennel examined: still needs vent, O2 @ 50%. Increased feeding. EEG done, no results yet. Foster visited: content w/what other docs doing, upped Lopressor & Ativan, antibiotics. Everything going into pic (?) valve in left forearm (central shunt in left shoulder gone). Opening eyes for Marshall & music (Orbital). No other voluntrary movements. Very relaxed. Linda in Waiting Room, Mom & Dave napping.
(Visitors recorded by Linda: Lynne Likens (Marc's mother), Stephanie, Marc, Vanessa, Theresa, Kathleen, Randy, Alana)
5:55 pm I was in with him 4:30-5:30. Left him peaceful. Heartrate 88-91. Sleeping. I put Brahms on the boombox. Eyes opened a little and he moved his head, when I told him I was leaving. I stroked his head softly and he settled. He likes having his head stroked, soft touch on forehead. (He loved this as an infant and toddler and we could put him to sleep this way!)
This afternoon he spiked a fever, sweated a lot, coughed some. Tylenol and a tiny bit of morphine (we are cautious about morphine). Marc and Vanessa visited. Alana is here. Stephanie visited, as did Ali. Nurse Penny will request something to combat effects of antibiotics; he is getting thrush in his mouth. Breathing with assist each 8-9 breaths. O2 is @ 50%.
6:30 pm Marshall & Kellie talked to Fennell, who wants to wait on tracheostomy to see if he gets to the point of not needing the breathing assistance. So we are aiming at Monday. Heartrate down in 80s - meds are working.
Alana is helping put together a fundraiser.
9:58 pm Brian's room. Eyes open intermittently, looking at me. Very aware. Slight grimace when he swallows: discomfort. Hands NOT tied.  Heartrate a little high, 101-6. Breathing 10 spontaneous to 1 assist.Randy Fitzpatrick was here before me. Brian's eyes open a lot, seemed very "glad" to have Randy here. Nurse said Brian didn't like having mouth suctioned or temp taken. He lifted left arm voluntarily! Randy talked to him a lot, as did I. When eyes are more open, heart rate goes up to 105-6.
(His hands were tied because he had been picking at things like the tubes. It was heartbreaking to have to tie him down like that)
10:45  Cleaned up and moved. Didn't want to open mouth for suction. Moved arms - as though to get away? - turned head. Moves head away when thermometer beeps in ear. Heart rate no higher than 112 throughout, except one moment of turning when up to 123. Went back down to 106 easily. 
Has been locking eyes with me: searches for me as I speak, then locks in. Very peaceful when I read Just For You.
(He was waking up into infancy at this time. The book was one that I read to him when he was very little. I think it is by Mercer Mayer, but I don't have it any longer. It might have gone to the grandsons!)
12:25 am 10-18-01 Dave is now with Brian. Some distress when turned to right side: coughing, heart up to 120 for ten-fifteen minutes, hard breathing. RT and nurse cleared his lungs. Should not be on right side - this happens every time. Long time calming. Very busy night. Clean up and morphine at midnight. Most alert yet.

October 17, 2012
I have inserted commentary/explanation as it occurs while I type. I hope it is not confusing.
This was very painful. I have to stop.