I’m tired. This day is all but finished.
My bed is calling.
I’ll do a quick update for those of you who missed my random FB posts. (BTW, phones don’t work in Children’s unless you hold it just right or are by a window so all I have is wireless. Hence the updates through the internet).
was is a rockstar! He’s been sleeping pretty much since coming out of surgery, except to fight assessments and he really despises the O2 tubes up his nostrils. And he really threw a fit when his room got so warm. But once they listened to me about how much he hates being warm and that I suspect he can’t regulate his temperature he’s been happy as a clam. Go figure.
Mama knows best.
The actual surgery went great! He’s now full of tubes. Belly and ears. But getting to that point is where the bumps occurred. He of course didn’t let things happen easily, or rather his anatomy didn’t let things happen easily.
We are still piecing together all the pieces that is Noah and today gave us another new piece. He is almost impossible to intubate, which shouldn’t be that big of a deal but there will be more surgeries and the risk of him needing it when he gets sick (pneumonia, chest infection, influenza, etc) is quite high. We had the #1 anesthestist working on him and he struggled. A lot. He hasn’t seen a case like this in a long time, maybe ever. Of course. Of course my little man has quirks that others do not. Story of his life! 😉
The PICU nurse said it’s just him and has nothing to do with CHARGE but I suspect other wise. I know it’s not a diagnostic thing with CHARGE but everything is so vast amongst the syndrome it’s most likely the reason.
So we just have to be extra weary of illness and keeping him healthy and if he starts having respiratory problems we were told to get to the hospital ASAP and don’t take no for an answer. Then if things ever start deteriorating and breathing becomes an issue we are to get a rapid transfer to Children’s. They don’t have much hope that anyone in my little hospital back home will be able to successfully intubate him. It’s kind of scary. Ok, a lot scary. But at least we know now and there will hopefully be no more surprises.
I’m exhausted and am heading to bed. Morning comes early when you have 2 children. The hospital sucks all life and energy right out of you.