Tuesday Update

We don’t know much yet.

Pulmonology has cleared her for surgery, but also doesn’t want to do the trach.

We are waiting now on ENT from Utah and ENT from Tulsa to connect, and for someone to make a call or give us the choice regardless of the need or timing of another trach.

If she gets a trach, gtube or not, distraction or not, it will be an ENT who does it.

My heart is heavy and my mind (on little sleep) buzzing as I wait for them to decide whether we trach today, wait for Cincinnati to do it at the end of the month, or do it here and send her back to Cincinnati also – either today or as scheduled.

It’s hard to comprehend that her future – even the length of it – depends on what I advocate for, how hard I fight for her, and her desire to keep fighting, and all that in context of what other people do or do not decide today.

The primary issue, of all things, which makes me crazy, is still the issue of custody. It’s a hard thing to make a judge choose a trach for a child, but we feel her judge has been prepared and understands and is ready to do it, so I keep telling them it won’t be hard.  I understand them not doing it sooner, when they were scared she would go back to bio parents who didn’t have trach training. But she is staying with us, and if that’s what she needs, then we need to do it.

I told them no one wants a trach for their baby.  I told them we get that a trach is hard and scary, that we understands it means suctioning and night nurses and all kinds of things. But it also means breathing.  And freedom from cords while she so wants to crawl and walk and run.  And it means growth and development. It means a protected brain, even with more surgeries coming up because extubation won’t matter anymore. It means hope.

Edit: I also spoke with the nursing case manager, and explained that we have everyone on board: judge, home health, SoonerStart, therapists, home nursing, suctioning equipment, and a room for the night nurse.

We will see what unfolds today.

The good news is she is still with us, and still trying to breathe, and still trying to eat.

She has interacted enough we don’t think there has been more brain damage from loss of oxygen, but it may be too soon to tell.

For now, this is our baby girl, who lies there with stuffies and toys all around her, but she is too weak to move even to play.

We hold fast to promises in blessing after blessing, that no matter her shortened life, we will be sealed together in the temple.

And on that day… I. Will. Weep.

  

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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