Results

We just had rounds and got her test results.

She is not having any seizures.

Her problems are not because of her heart, though it is working a little too hard as she tries to breathe.

So she is fine, they say, because she is holding her sats.

We said that we weren’t here because she couldn’t hold sats.

We are here because she was maintaining sats at the expense of her weight and development, and getting weaker at trying to do so.

They replied with, “well, she’s cute!”

Are you kidding me?

Of course she is cute! Even in a smurf hat! She’s gorgeous!

But she would be even cuter if she were pink.


It’s not that they are bad. Know that. These are good doctors, and our area fought hard to have them here.  But this is beyond their scope of practice and they aren’t listening to us or the specialist consult.

They are only watching numbers, and not understanding what we are saying about weight and development and stamina and endurance and how she is running out of steam.

And I am just a mom, so not understanding how she is just fine “for her baseline” when I really believe this isn’t her baseline.

In the meantime, our medicaid case manager that loves her, said she would try again to get the medicaid doctor to approve a contract with Primary Children’s in Salt Lake so she can get her trach there from her own ENT… But that we we need medical records (which ones?) and a letter of medical necessity explaining why it can’t (won’t?) be done in Oklahoma.

While we wait for Monday, or after because because the doctors we need for that are all on vacation now, our nurse practioner is still trying hard.  She is talking to our Medicaid person herself, trying to get Kyrie’s case moved from pulm to ENT, so that maybe the local ENT will listen to the Utah ENT when the pulm didn’t.  She wants them to stop even thinking about it as lungs or even as PRS, and just do it because of development since the rest is confusing them.

I think she still wants a gtube, too, but we kind hope that with a trach she might not need the gtube.

But whatever she does need is what we will do, for sure.

So all that to say that I think we come home today, but that we aren’t giving up, and have some backup plans, but may really have to just move to Utah.

Gulp.

I’m not that kind of Mormon, I don’t think, with my blurting mouth and lack of doilies and rainbow children.

But our family comes first, and our children are in crisis. It isn’t just about Kyrie’s airway.  We also need interpreters at church, or a Deaf ward with other Deaf, and a Deaf school for Mary where she can be home with us during the week, and better CP clinics that have time and options for Kirk and Kyrie, and autism services that aren’t cut from state budgets, and speech for three of them from someone who isn’t burned out and hating her job, and help with Barrett’s Fetal Alcohol Syndrome we just found out about and and and… we have six special needs children, and they need access to everything that will help them be themselves successfully and happily.

I told Nathan that if we have to move to Utah for that cute baby, we are living on the west side.  We gotta keep things real.  I would hate for our life to get too easy.

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.

Comments

Results — 6 Comments

  1. He knows what is needed. How, when and why. We just have to trust. Everything happens for a reason and someday we’ll know why.

  2. Ha! I have to laugh at the Utah comments. I always said I didn’t want to live here, either, but we’ve made it work and it’s still good. But hey, keep in mind that if you lived on the east side you’d be much closer to PCH, and your princess seems a lot like my guy who thinks that PCH is a vacation spot, and he goes on vacation way more often than anyone has the right to. Then again, I live an hour away myself… But if you move here, we could get together!! :)

  3. LOL! From a blog stalker who lives on the west side of the SLC valley, I’d totally love your “kind of Mormon” in our neck of the desert. Love following the adventures of your faith and your family. You are an amazing writer. Thanks so much for sharing you blurtings.