Blessings After Three Weeks

October 29, 2012
This is a cathartic process. I find myself reliving the feelings and almost dwelling in that world of 11 years ago. I am dreaming about Brian as a small child. Just before he awoke, I dreamed I birthed him again. It's like that. I am immersed, in pain and process and wonder and loss. I am also realizing how far he has come.

Monday 29 October 2001
7:26 am Brian had a quiet night. More apneas (had several while I was there) - from morphine AND Resterol (sleeping med?) First truly incompetent, unpleasant nurse last night, Marianne. We will make sure she does not return. (She didn't; we fired her from Brian care)
9:45 am  No more problems over last night's nurse. Jamie and Merrikat called. Dr. Fennel said apnea caused by Brian and respirator: He stops working so hard. Will be on different sleep med tonight. He is only given morphine (3 mg) when very agitated, especially (specifically?) after gagging incidents (caused by build-up of saliva atop trach tube). There will be no more tv for time being. Marshall suggested Lord of the Rings, which Brian had talked about reading this fall (I remember, too). I may switch to The BFG from The Witches: nicer story.
Amantadine will be increased to 2x daily. Dr. Sullivan VERY pleased. Fennel thinks B will be out of ICU in 1-2 weeks. Then: Rehab at Providence? Nursing facility? 
7:10 pm Dave and I visited Brian together this afternoon. It was also an opportunity for Dave to meet Penny the BEST NURSE. Brian was awake and alert. He spent time in his chair today. he is on a physical/occupational therapy schedule: 10 am and 1 pm, with time afterwards to rest. Penny said Brian was definitely trying to talk to her today. The trach tube will be downsized soon, to a point where it can be plugged or capped temporarily and he can talk. It won't be removed until he is breathing deeply enough to get enough O2. He had no fever for 24+ hours, has been off antibiotics for a few days (blood infection was probably just skin staph; didn't show again). Last night heart rate was down to 60s, high 50s, which was lower than they wanted. Will be on a different sleep med tonight, and will be off one anti-seizure med. Dr. Foster wants to put in de-fibrillator ASAP. 
Penny encourages us to start coming in during the day. It seems important for me to start doing so, ASAP. Dave and I will begin adjusting; he may stay on nights for a while.
Laurel visited. Alana visited. Rosemary is back. Eileen called this evening. (My cousin in California). Tony visited us at Cheney House when we were asleep.
9:40 pm In room with Brian. He is starting to fall asleep: got sleep meds about 20 minutes ago. Nurse Bruce is changing trach dressing. Brian had brief gagging episode w/body shakes; Bruce gave him ativan (seizure med). Heartrate upper 80s - low 90s. On vent for night so he doesn't have to work so hard: 1 assist, 40% O2 . He isn't smiling at me like he was, but I seem to be a comfort. Jamie called tonight. 
I will leave early if Brian seems to be sleeping deeply, calmly. More sleep so I can be here during the day. 
12:10 am Very peaceful, sleeping young man. Moments of eye opening & staring, lifting arms and smiling or grimacing: checking things out, dreaming, semi-waking? Spoke to him briefly when eyes open - no response, except to close eyes, eventually doze. Heart went up past 100, then back down to 80s,quickly. Left him quietly with Dave. Most peaceful night I've seen.

October 29, 2012
That horrid nurse! I was furious. She would not let me near my son, would stand in front of me to bar my way. When Dave came on that night, I told him and he got rid of her. 
All the medical terminology and observations of equipment became second nature. We paid as much attention to the monitors as the nurses and doctors did. The after effects for me are that I cannot even watch a film of some one in ICU without getting upset. It doesn't even have to be real. And I HATE hospitals. This is despite the wonderful care Brian received. It's the association with all that pain and stress. I don't know if it will ever change. When I visit someone, it's all I can do to remain calm. Dear friends, if you are ever in hospital and I don't visit, please understand!
Dave and I started switching to days at this point, especially me. 
Tony Henthorn was the wonderful guy Dave was working construction with when all this started. Tony had just that summer had a wall fall on him and HE was in ICU. He was another walking miracle. Dave and Tony worked together again later, when we were settled in Ashland with Brian. 
All these wonderful people. Makes me cry with grateful tears. Bless you all. Nurse Penny too, wherever you are!