On the Brink of Speech

Tuesday 6 November 2001
1:50 pm  Brian had a restful night. Thom was with him until 10:30 pm. I was with Brian from 8 am till 12:30 pm. he had physical therapy, occupational therapy, and speech therapy. Brian is getting PT twice a day, unless it's too much for him. His PT was David, and I helped get Brian to sit up on the edge of his bed. He was scared at first, but after reassurance, he did it. He tends to lean backwards, so we will work on using his head and abdominals to sit more forward, which will help him sit up straight. I also helped David and Nurse Renee get Brian into the chair. Brian was tired and grumpy during OT, and didn't want to do anything. I spent time with him in the chair; Penny and I were talking and he didn't like it. We were talking about making sure Penny knew which of his friends had been approved for visiting. Brian kept pointing to Penny and I. The speech therapist, Beryl, came in while Brian was in the chair. he was more awake and cooperative. I watched him mouth the numbers 1-10, the days of the week, and the months of the year - and he KNEW them, could say them without the prompt from Beryl. Then Beryl had him read simple commands on little cards, like "Move your head." She read the first one or two, he did them, then Brian read them and performed the tasks! Beryl said on Friday he could do very few of the tasks, and couldn't read them.
I helped get Brian back in bed, after he dozed a bit. Then he decided to wiggle around a lot and try to get OUT of bed himself. He also is pulling a bit on catheter, wires and breathing mask. Earlier in the morning, he was trying to blow into a washcloth with his mouth, testing to see where the air was coming from. he also seems to be trying to cough through his mouth. (something he could not do with the trach, of course)
The downsized trach should happen this afternoon. The speech therapist is working on swallowing, too, in preparation for speech and eating.
Dr. Foster reports NO damage to his heart, and no arrhythmias while Brian has been in the hospital. The ICD is set to set the pace if his heart-rate drops below 50; it is mainly to defibrillate.
Dr. Solomon will make rounds after tomorrow morning's meeting. Then I can talk to him about re-hab. Marshall and Kellie are not speaking to Dave and I, are talking about us behind our backs to the pink ladies (and possibly others), refuse to negotiate a schedule, and are coming and going at their leisure. They do not believe Brian needs us (parents) around - even in the waiting room - consistently during the daytime hours or at night at all. Today they arrived at 12:45 pm 
(This was the unfortunate beginning of a long-standing conflict between the two pairs of parents. Dave and I, however, did not attempt to tell them what to do, nor did we talk about them disparagingly unless it was in self-defense to criticize their unwarranted hostility. We definitely disagreed about the presence of parents there, but it seemed that Brian's improvements were directly related to the presence of Dave, Thom, me, and Marshall and Kellie. Nothing negative was happening as a result of us all being there. This was also in direct contrast to Marshall's earlier argument that nurturing parents were the only people who should be there. I am still sorry this all had to happen, but I was not the cause and neither was Dave).
9:50 pm  Brian's trach was downsized this afternoon! So far he has not been able to try to talk because he has fallen asleep. Tomorrow we will try again. 
There is also talk of taking Brian out for a ride in the chair. I would love to be there for that, but it may happen in the afternoon, when I'm gone.
Jacob Phelps tried to visit but Brian was asleep. Alana visited tonight. The "unofficial" kids will no longer be allowed to visit; someone spoke to the social worker (Sarah), who talked to the head nurse (Iris) and the list I gave Penny this morning (with HER approval) was vetoed.
The reasons: (1) violation of ICU rules; (2) too much energy expenditure (even though the kids visit in late afternoon and early evening) that could interfere with physical therapy, etc (and also other visitors). It's unfortunate, but we want to follow rules and not interfere with Brian's progress.
Dave brought Brian a Nerf basketball set-up for his bed! Brian hit a basket! When Dave said "I love you," Brian gave him a huge smile. Dave also brought Brian a Koosh ball, because he remembers the wild games the boys played with Koosh balls years ago.
Marshall and Kellie brought more cds and photos from Homecoming, and of the animals. (They had horses, dogs, chickens, a zoni).
Aunt Linda brought in the conflict, and was shushed by Dave AND Penny.