Friday, March 14, 2008
Quick Report
Not much to report. He was awake a lot last night however it was different than his regular storming cycle. His heart rate and blood pressure stayed stable but he just couldn't calm down to sleep so after a couple hours we gave Ativan. I haven't really seen the full blown storm in a while so they are definately improving. The rehab team is going to add melatonin at night to help with the natural sleep cycle and possibly decrease some of his day medication so he doesn't sleep all day. He is still really gunky sounding in his upper airway so he is being suctioned regularly and the swallow study has been re-scheduled for 2:00. That's all folks....
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11 comments:
Loved the pics from last night. Do his eyes look better or is it just the pics? It sucks you have to make all these decisions about your precious baby. I'm with meghan in watching for "charlie steps". How is the house? Are you all moved in. Have you spent the night? Also loved the pic with Grandma Cheryl. (Yo sis--we have the same haircut.) We still check several times a day. Hang on----
Regarding his eyes- I think his eyes look a little better. He opens his eyes a lot more and they move from side to side although the right is still deviated further to the side. His pupils are extremely large and do not react very well to light so that is a bad thing and it has not changed.
The house is fantastic- I have not unpacked anything since Monday because Rob went out of town so I have been at the hospital quite a bit. Britt has slept there one night and he loves his new room but still wants to sleep at his old house.
We're still praying for you and your sweet Charlie. What do the doctor's say about his vision...do they know if he'll be able to see?
The doctors haven't said very much about his eyes. The optomotrist looked at his eyes several weeks back and said anatomically they look fine. It is the same issue of whether or not his brain will process the signal. His vision will not be tested until right before we go home because he has to be at optimal alertness. I'm really hoping that he will have function either his eyes or ears so we will be able to communicate easier but it is a real possibility that he will be deaf AND blind. That is one reason why we are pushing the cochlear implants
ang i admire you & your courage everyday.
Have they turned his feeds to intermittent yet? I am anxious to see how that goes...
Haven't cried for a little while.....until today. You truly are amazing ang, and can't wait to help tomorrow.
Andrea- the intermittent feeds started yesterday. He gets 80 mL over 60 minutes then has 1 hr off and then another feed. Gradually they will increase the amount he gets and then increase the time in between feedings. He seems to be doing fine with it although I think his belly bothers him more now. He hadn't had anything in his stomach for over a month so it's kind of an adjustment. Also now he has really stinky breath.
Thanks for the enlightenment Angel. We have had our own version of brain damage induced blindness. After his stroke,David was left with "left sided neglect' (as well as paralysis). A benign description for not seeing, or even being aware of, anything left of midline. He is not blind in the left eye but the brain doesn't process it.
I never thought I would pray for just ONE sense to be functional for Charlie. Please--just one!!!
I went through a time when I was mad at God, but it seems like you have been much stronger than I and under much worse circumstances. I stand in awe at your strength and faith.
You know how they say babies dont talk because they would spill the beans about all the wonderful things in heaven...What do you think Charlie would say? Look at the picture where Dave the nurse has his hand on Coops chest...I believe he is looking back at his guardian angels...
Love that comment, 'anonymous'. I too, know that to be true.
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