So Baby Girl failed the first half of her sleep study badly enough they sent us back to the other part of the hospital because the sleep center doesn’t have a crash cart.
Except after that she rolled over and slept on her side, which she has just learned to do, and did great after that.
So the pulmonologist is in shock, because he wanted to trach her today, but now suddenly she is doing great again!
Learning to sleep on her side, plus the distraction she already had, so improved her sleep study score that now they want to wait to do anything else.
And because she is old enough to start adjusting her own airway, like rolling over to sleep on her side when she can’t breathe at night, he wants to wean her off oxygen!
She also has suddenly gained a whole new pound, and grown an inch! He said probably because sleeping on her side has so improved her oxygen level, that she can finally start growing again. So we will see a new spurt of growth, he says, and she will feel so much better… Or get sicker from outgrowing the new airway, again.
So she’s not okay, but we know her baseline now, which is fragile and precarious, but we also know the signs of when she is in crisis.
He will continue working with Cincinnati for what to do next and when and where, but for today, she is doing better with oxygen.
We are still to follow-up with neurologist to rule out seizures and cerebral palsy from severe desat events.
But her scary desats are brief now, considering, and she fights to recover from them so she is doing much better and growing in a developmental way will help her adjust her own airway, which buys time before having to do another distraction or trach.
He was surprised, he said, because he was prepared to trach her.
But then she fixed it, by herself.
He can’t explain that, he says, but he has to respect it.
He says he expected her in surgery today, for a trach, and had concerns that she wouldn’t be able to pull through except on a vent, or at all, even if they did surgery in Dallas.
But now, she doesn’t seem to need surgery at all, not today, not right now.
She is just fine, stable again, and I don’t know why, he says.
She didn’t want surgery today, he says.
She must not have been ready, she says.
It wasn’t her time, he says.
She’s a miracle, he says.
And so we are headed home.