Roller Coaster Wins

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.


Posted in Health permalink

About Emily

I am a member of The Church of Jesus Christ of Latter-day Saints since 2009. I serve as a Chaplain, and work as a counselor. I got bilateral cochlear implants in 2010, but will always love sign language. I choose books over television, and organics over processed. Nothing is as close to flying as ballroom dancing - except maybe running, when in the solo mood. I would rather be outside than anywhere else, especially at the river riding my bike or kayaking. PhD in Marriage and Family Therapy, and currently doing a post-doc in Jewish Studies and an MDiv in Pastoral Counseling. The best thing about Emily World is that it's always an adventure, even if (not so) grammatically precise. The only thing better than writing is being married to a writer. Nathan Christensen and I were married in the Oklahoma City temple on 13 October 2012, and have since fostered more than eighty-five children. We have adopted the six who stayed, and are totally and completely and helplessly in love with our family. Nathan writes musical theater, including "Broadcast" (a musical history of the radio) and an adaption of Lois Lowry's "The Giver". He served his mission in South Korea, has taught song-writing in New York City public schools, and worked as a theater critic for a Tucson newspaper. This is not an official Web site of The Church of Jesus Christ of Latter-day Saints.


Roller Coaster Wins — 2 Comments

  1. I’m gonna wrap myself in paper, I’m gonna dab myself with glue, stick some stamps all over my head, I’m gonna mail myself to you! She is the cutest thing!