A "Healing, Recreational Day"

Tuesday 20 November 2001
7 pm  Brian has had a busy first day in Re-hab. Dave and I arrived before 8 am, for breakfast. Brian was sitting up on his bed, writing on his calendar! He had a shower, then met us in the dining area for breakfast. He did most of his showering himself, and styled his hair with gel. His breakfast was late, and Dave gave him some bran muffin. At one point, even though Brian had his own breakfast, he swiped the last bite of Dave's sweet roll!
Dave helped Brian do his menus through Thursday, while I met with Janet Murphy. Brian wet himself all the way through, because he and Dave were both so busy.
Dave left for a couple hours to do laundry, while I stayed with Brian. He slept through his second morning PT, for about 45 minutes. All the staff are welcoming of our involvement in Brian's therapy. We can do as little or as much as we want or they need. For these first few days, they WANT us here to help Brian with the transition, and aid in their assessments of him. Dave helped with PT this morning, and we were both in the room for this afternoon's OT assessment. Brian is exhibiting apraxia, which is a condition in which the signals from his brain to his muscles and limbs don't connect properly. He can KNOW what to do, but can't get his body to do it. It causes his hands and arms to be busy a lot, his legs to squirm when he concentrates. It causes him to fixate on one eating utensil and maybe use it improperly (fork for soup we have seen several times). His left side is also "weaker" than his right - not muscularly, but in terms of the signals it receives and processes.
Brian called Dave "Marshall" at least twice today. I am "Mom". When PT Amy came in with her hair pulled back, Brian called her "Kate". She DOES look like Kate Lewis!
Brian is wearing "Depends" for his incontinence until it gets taken care of - until he gets re-trained. He had another accident this afternoon.
When Brian started getting overloaded this afternoon, around 3 pm, he began to obsess over other people having heart attacks and comas, warning us that they might happen on October 8th, 9th, or 10th. This continued into dinner, except for half an hour or so when I read to him, between 4 and 5. It scared Alana. He was almost frantic about it, apologizing to us about the possibility of it happening. It also seemed like play-acting, like a little kid transferring a bad experience onto others in order to deal with it. And WE were given warnings, unlike Brian. He also warned us about having a hysterectomy  (I had spoken of mine) and of choking on food. He told me, after Alana left with Dave at 5:30, that he saved Dave's life by warning him not to choke on chocolate milk. Alana had been helping Brian eat more slowly and carefully.
(In retrospect, it does seem like this was a coping behavior, and connected to his fear of being alone and falling asleep. As Brian's awareness of what happened became clearer, he became fearful of it happening again.)
I finally got Brian completely away from the subject(s) when Marc Likens came to visit around 6 pm. We started talking about books.
Dave, Marc and Brian have been playing three-way catch in the hall for half an hour, giggling merrily (it's 7:25). Brian is a clown, I guess! 
Spam visited while Brian had lunch, and Alana was here from 4:30-5:30.
Brian's voice is almost normal, slightly breathy. It sounds great. 
Marshall and Kellie have not been here all day.
Brian is working on remembering that he is a senior.
Dr. Solomon contacted Dr. Foster to have Brian taken off one heart med, kevlan, because it is lowering his blood pressure and might be causing drowsiness. So he is only on the lopressor, which is like his atenolol.
Brian is apologizing a lot whenever he does ANYTHING that might be perceived as wrong, inconvenient or unpleasant. We are working on helping him to realize he does NOT have to apologize - especially for ANYTHING related to his coma. Yesterday he became frustrated at not being able to get on the commode by himself; his frustration level has been surprisingly high and that was the first time I really saw him angry. (although, as a child, he had a bad temper)
The atmosphere here is much more relaxed and congenial than in ICU. Very professional as well.
Brian's schedule for tomorrow is up and looks full, with rests scheduled, too. Parents are scheduled for an 8 am meeting with the social workers, Janet Murphy and Shelly Simpson. We don't know for sure if Kellie and Marshall  are actually going to show. We will discuss plans for Brian's care here and in the future. NO VENTING OR DISCUSSION OF PAST "TRANSGRESSIONS". "You're on the team or you're out", as Shelly put it to me yesterday. 
8:30 pm Marc played Chopin's "Nocturnes" on the piano in the dining room. Brian sat transfixed and said, "I can listen to this all day." (It was gorgeous; Marc is a talented pianist and it was so sweet of him to sit down and play. Brian used to listen to a cd of that piece after this)
When "the boys" were playing catch, the ball hit Brian's head and he said, "Oh, I have a head injury!",  faking it, acting up.
Brian and I were talking, Brian lying in bed, me in the chair stroking his forehead, and he commented that I needed to brush my teeth. He said I should smile, brush my teeth, "and obey me!"
"I just feel good, knowing you guys were there." (about us in his room)
"I had another healing, recreational day."
The PEG tube is coming out tomorrow morning! It will happen around breakfast, so his breakfast will be delayed. It will be slightly painful, so they will give him some Tylenol. We told him, so it wouldn't be a surprise. 
10:15 pm  We stayed until 9:30 pm. I read a chapter and a half of Alice, until Brian fell fast asleep at 9:15. We covered him, put up the safety bars, and turned out the light. Merrill Lynn sat with us and visited before we started reading. She is very sweet with Brian, And Bryan is a big teddy bear.