Future Plans

Saturday 3 November 2001
10:15 am  I spent an hour and a half with Brian this morning. He was very active, "running" his legs, trying to get his "space boots" off (They were to keep him feet from curling in), moving his arms, trying to get blood gas laser monitor off his right index finger. His right arm and hand are generally more active than his left; he clenches his left hand still more than his right (not surprising since he is right-handed). I told him to wiggle his fingers and he held up his right hand and wiggled the fingers, smiling. Brian likes it when people talk TO him, not around or about him; he smiled BIG when Marshall and I held his hands and talked to him, frowning or looking solemn when we talked to one another. He fell asleep while we were in there.
Dr. Ordahl came in for Dr. Fennel. Brian's left lung is still problematic; the lower lobe still wants to collapse a bit. They will keep him off his left side. he also has thick secretions. This is from a combination of pneumonia, coma, and lack of movement. NOT from heart condition. So he needs to move around and keep coughing.
Dr. Sullivan is surprised at Brian's progress, as is everyone (except those closest to him, who know how strong he is!) He can't predict anything. Says in six months Brian should continue to progress, but there's no way of knowing if he can return to school. Dr. Solomon will determine the re-hab situation. Brian can't move out of ICU until his lungs and breathing are ok. He probably can't go to re-hab at Providence until he is functioning more independently. A nursing home would be the interim situation, where he can continue therapy AND recuperation. Dr. Sullivan's role is lessening now, since Brian is no longer in a neurological crisis. 
Dr. Ordahl says the trach could be downsized as soon as Monday or Tuesday! I told Brian.
Alana is here. Kellie's brother Greg brought three HUGE balloons.
4:15 pm  Brian is resting after suctioning, coughing and a heartrate that spiked up to 150 at one point. His heartrate was up around 110-115 anyway; Kellie said nurse thought it might be from rash on his bottom (??) He had PT today but we don't know about OT. Was definitely more tired this afternoon. David Voeller, Matt Shultz, Ben Carrier are here. Kellie and Marshall are gone. 
10:10 pm  I visited Brian with Ben, then David. Dave visited Brian with Matt. Brian was mostly quiet, though a bit animated with David, who talked to him the most. BIG smile for David, too. Suctioning at 5:45 while Dave and Matt there, so they left. Boys all left. Kellie and Marshall left at six and never returned. Dave and I left (not realizing they were gone) and I returned at 8:45. Brian very quiet. HR up to 112, down to 90. He still seems comforted by me, especially light hand stroking forehead. Nurse Bruce says left lung isn't collapsing, just not filling properly. No results of culture yet. Trazidone still for sleep. No trach downsize till lungs all clear. For re-hab, Brian must be able to endure whole day of therapy. 
Jesse called.