Admitted. Again.

From the best we can tell, our early intervention team (speech path, occupational therapy, physical therapy, developmental therapy, etc.) or someone from that team called our pulmonologist today to tell them how sick the baby (toddler!) has been, and how this is different than in the past.

She has always had sudden and seemingly random severe desats, but now we are getting blue lips and fainting spells and whatever happened two weeks ago when she quit eating for the whole four days and I had to put the ng tube back in.

Then finally, our ENT in Utah and the pulmonologist consulted, and they decided she needs a trach immediately.

The Pulmonogist called us and told us all this, and that we need to have her in Tulsa with her hospital bags packed by 230 this afternoon.

We dropped the kids off at Nathan’s parents, ensuring they were calm for the extra time with Grandma and Grandad.


Because they are always so calm and good, right? All six of them?

They are angels.  Just busy Angels!

We got to the doctor’s office on time, and waited while he went through results.


He told us again that it was time to trach her, because babies aren’t supposed to be passing out or turning blue or not growing.  Most parents, he said, don’t have to resuscitate the babies a couple times a week.  Most new toddlers don’t sleep 22 hours a day.

She told him what for, naturally chatting it up while she had the chance.


Then he got her latest sleep study results, which are actually better, because PRS children have all kinds of variations in sleep studies, and said because it is better then she doesn’t need a trach after all.

What?

But, he said, we still need to find the cause and get results so we can fix the problem.

Because she is a sick baby, he said.

And she climbed a chair, stood up, and shouted, “Kee-yay no baby!”

I about fell to the floor laughing so hard!



She is such a big girl!

So that’s how she got admitted, but not for a trach, or maybe, we don’t know.


The first thing, as always with her, was a chest X-ray to be sure she doesn’t have pneumonia again.

Then blood work.

Then an IV, because the only thing better than a baby with no airway who likes to try dying often is a baby with no airway (for intubation) and no IV access.  So we got IVs just for the fun of it, and I covered them with a leg warmer so she won’t mess with it.

Then we got big girl food ordered for the first time, and they brought her a tray of chicken and green beans, which she ate Korean style like Papa.


Then they did an EKG for her heart, to make sure her heart murmur or hypertension from working so hard to breathe isn’t the cause of all this.


Next was the dreaded sleep study wires, except this time it is for a long EEG (?), to check her brain for seizures and the area where her stroke was – the medulla something, which is the part of your brain that tells you to breathe.  They want the be sure this isn’t the cause, because if that is what is wrong, a trach won’t help that.



Then her old caseworker came by to visit, because we love her and she loves that baby, and then she had breathing treatments, and the put on oxygen for the night, and finally we could give her milk and sing our rocking song and put her down for the night.

I put blankets over the monitors and computer screens, and pulled the curtain closed to block hallway light when nurses come in at night. Maybe now she can get some sleep.


The doctor her at the hospital said she needs a trach, but it sounded like the pulmonologist changed his mind again at the last moment, so we still don’t know if that is what is happening or not.

Or if they will find new things, or more secondary to airway things, or nothing.

We just want her to breathe.

Breathe, and maybe be pink instead of pale or blue, if that’s not too much to ask.

We trust Heavenly Father’s plan for her, but pray for clarity and revelation so that good decisions will be made for her, and Nathan gives her blessings to help her be strong and keep trying.

We also ask for prayers for Nathan’s parents, who have all five of the other kids right now!  Rumor has it that pancakes have already entered the picture! So funny!

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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