The big meeting/conference is set for tomorrow at 11:30AM. I am nervous. Lots of doctors, nurses, respiratory therapists, social worker, dad & myself all discussing Drayke's prognosis & future care.
Discussed during rounds this morning about the absolute need for Drayke to get a trach. I feel down to the core of my being that he will surprise everyone and do far better with it rather than the ET tube in his mouth. The times he de-sats the worst? When his tube is getting re-taped. Other than that he does great. The RT made the argument to the doctor "you need to stop looking at numbers and think of the baby. He is 7 months old and cant develop the way he needs to with him intubated". All of his labs from this morning came back great. He is healthy except for the lungs.
Today we are starting him back on scheduled Methadone to begin the weaning process off of the morphine. We aregoing to do this very slowly. The morphine is clogging up the plumbing and he hasnt pooped in almost a week.
The nurse last night weighed him and Drayke is now a whopping 10 pounds 11 ounces! This is not water weight either. Now once he does start having bowel movements again I am sure that will drop a bit but dad are enjoying the fact he has gotten so big.
One small concern I have are his eyes. One seems to be a little off kilter, most likely due to him almost always being on a side and the muscles not quite developing correctly. They move together, but look a bit off. At least I am sure he can see and hear.
We finally have been able to use the new sheet I made Drayke. Dad found some dragon flannel at Joann Fabrics. It is so cute and I made sure that I left it long enough to turn into a fitted sheet once he gets home.
3 comments:
Good luck tomorrow. I'm sure there will be lots of emotions involved on all parts. I'm sure all your followers will be anxiously checking to see how the meeting went tomorrow. Lots of prayers for your family and precious Drayke.
Laura Kelly
Good luck, I hope everything goes well. I'll be thinking of you and constantly refreshing the page! :)
inkprincess on LJ
Thinking of you all. Hoping that yesterdays meeting gave some positive news for you and your family.
Fiona
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