Losing Air

We are somewhat disheartened tonight after Kyrie’s post-Cincinnati follow-up this afternoon.

She’s lost weight since being off oxygen when awake, has been super fussy but isn’t sick, and is sleeping all day and night again.

This is the third or fourth time we have tried to wean her off oxygen and this happened.

She is back on air full time, while we still don’t know what happens next. She was only blue once in the last week, which is progress, but she’s maintaining her sats at the expense of her weight, energy/activity, and alertness.

It’s like swimming in circles with this one, no one wanting to trach her because she’s better than some babies like her (not dead yet) and so much better than she has ever been, but everyone agreeing she still can’t breathe.

Except she can, so much better than before!

The distraction last summer was successful, mind you, and saved her life.  I know it did.  I know not all doctors do them, and not all parents want it, and I hope it is many, many years before she has to have another one, but the one last summer saved her life.  I know it, and I will always say that.  The team last summer saved her life, and now she is worlds better than she was, and we are so grateful.

Besides that, compared to when she was born, her airway is gorgeous, and we are so glad she can breathe at all, so it’s hard to complain about a baseline that’s better than where we were.

But that’s not the same as having enough air.

And we don’t think she would need a gtube if she could breathe.

All this means we are back to the place of waiting for her to get sicker before anyone will help, while hoping she will get better in her own time while we wait, and all that while being so glad she is looking so perfect otherwise.

That’s why they think we are crazy, I think, because it doesn’t make any sense.


If she can do it, obviously getting better through this without a trach is better, but we don’t know why everyone keeps talking about it but no one doing it, and we worry about her brain and weight and heart because of it.

On the other hand, if all she needs is to be plugged in to a 75 foot cord while she runs around the house, and church, and the backyard, and anywhere else we go, then that’s not so bad, really, when you consider the option of not breathing.

In the meantime, we are grateful for those doctors who do listen to us, and do care for her, and do take good care of her, and for nurses who advocate for her and love her so well despite the paperwork she gives them.

This one is already smiling and playing and laughing again since pediatrician said we could put her back on air full time.  She’s trying so hard!   She really is!

Posted in Health, Life 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.

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