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.
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.