Today was a bit of a quiet, slow day. Donna chose to sleep and rest aside from the therapists getting her to the side of the bed and exercising a bit. All that rest has to translate into healing and that is great by me. I talk much about her successes, so for balance I have to say that she completely underperformed for the neurologist today. Good thing we saw her do much better yesterday. She has the slightest of fever so if she didn't already have our full attention she does now. All good though.
Her pulmonologist will be here early in the morning and will downsize her trach for the final time. This is great news as it gets her closer to the end of that component of the process assuming all stays well. If she does well initially, they will start to cap it and let her breath fully from mouth and nose. All part of the adjustment process and good news.
I spent a good portion of the afternoon touring the TIRR ( The Institute for Rehabilitation and Research) in the medical center. It is an amazing facility that I already knew was world class. The dilemma is when is Donna ready to go there. Some are saying now, others advise differently. These are all bright, experienced people and it confirms for me one thing for sure which is that we really aren't sure. The discussion will continue and we'll make a call on it next week probably. This is really about is she awake enough?, what pace will she wake further?, will aggressive rehabilitation enhance that process? I do feel the decision we made 2 weeks ago to not go to TIRR at that time has been a good one. There is no doubt in my mind she will go, it is all about the when. I need to be patient (there it is again) and let the answer unfold. We will. We are asking so many questions the way Donna would. She would get to the right answer and so will we.
One final thing on the Glasgow coma scale I talked about yesterday. I studied the detail a bit more closely and 4 points are directly related to speech. These are 4 she does not have yet and as the trach comes down and her right brain recovers we will hopefully see more. We all know she has the potential in speech! The other thing is that under motor skills, she hasn't accomplished the point that focuses on "obey commands" I've explained to the neurologist that Donna should really be working off of a 14 maximum scale as she has never obeyed commands. It took him a while but he finally chuckled. I was serious though....
Another day with my girl, no where else I would rather be.
Bob
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