Well we made it to check in successfully at 545 this morning, however, we are home again.
We received a call from the anesthesiologist last night to review her medical history and such. She expressed her great concern that Hannah was still too medically fragile to go under anesthesia. We decided we would make it a game time decision.
This morning we had a group meeting with the anesthesiologist, plastic surgeon, ENT and the Pulmonologist and decided on a couple of things.
Hannah should have a repeat sleep study now that she does not have her NAM device. We believe it may have contributed to less than desirable results.
She should also have her broncosposy and upper GI done at a different hospital (they do not have a Ped ICU at rose where we were scheduled today)
Then she should have her lip adhesion
This will all happen over the next 2 months or so.
The biggest concern is since she has sleep apnia, intabating any baby before they are 60 weeks old, there is an increase risk that they will stay asleep too long. After 60 weeks, this decreases dramatically.
So, we are home now, we are all tired and Hannah doesn’t know one thing from the other.
I know this isn’t a “cry wolf” situation, her day will come, we just have to get a little bigger and stronger.
We are neither frustrated or discouraged, we appreciate once again that everyone has Hannah’s well being in the forefront of their decisions.
Keep her in your thoughts…we have appreciated them so far.
The clock is still ticking…
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