Kyrie saw the local ENT we found who would review Cincinnati records and consult with our specialist ENT in Utah.
This appointment was a miracle, just finding the one who was willing to wade through so much history of one so tiny.
He even knew our Utah doc from going to school there, and also used to work with jaw distractions and PRS babies before coming to Tulsa, so knows what he is doing even with the tiny airway and intubation risks, etc., and gets that a trach would avoid those risks as much as for any other reason during this season of so many surgeries.
We told him Cincinnati has been amazing for plastics, that our pediatrician is extremely responsive, and that the pulmonologist is leaving her on oxygen and considering a gtube.
We told him what the Utah doc said, and showed him the scope pictures and other results from previous surgeries, studies, and scopes. We talked about what other procedures she has had already, what they say she will yet need, her survival rates, and concerns from her therapists, speech-path, and dietician.
He says she she needs a trach and gtube.
He also says she needs surgery to repair her epiglottis as urgently as the rest of it, which is the first time anyone has said that, though everyone agrees it is too big and the wrong shape and prolapsed somehow.
He says she should have been trached when she was born.
He says he will do it if Cincinnati will not.
We are waiting for the rest of her records to get sent down, and we will see what he thinks about those.
We did learn that Cincinnati didn’t trach her yet because she was at least functioning on oxygen and they were concerned since she was a foster baby that if she got sent back a trach would put her in danger with a neglectful or abusive family.
Her therapists (OT, PT, speech path, developmental specialists, etc) that see her every week – they want the trach and gtube because every time she is weaned off oxygen she regresses developmentally, she loses weight, and she gets pneumonia.
They also say doctors who only look at stats will see better how much she is struggling when she moved up to the one year old charts in a few weeks instead of registering on the infant charts at the size of a six month old.
Regardless, while it may happen automatically if it continues growing emergent, we have found ourselves in new territory where we may actually get to choose between another distraction and a trach. Another distraction will only open the top of her airway, not the lower part where it narrows, and a trach will be longer term (but not forever) and require suctioning and gives open access to her lungs. So. It’s tricksy.
No one wants a trach and gtube.
I am relieved, though, to have found a local doctor willing and capable to trach the baby if that’s what it comes to, without having to go all the way to Cincinnati.
We go at the end of April back to Cincinnati, and then bring the results back and scopes back for him to see and schedule a trach if Cincinnati has not already done it.
So there’s that.
In other news, tubes are perfect and no ear infection – cough is pneumonia, sigh, so that’s another reason for the gtube because of aspirations.
She is trying so hard!
Also, I’m pretty sure she has just stayed tiny so that she could still wear this size 3 month Easter dress a friend gave us last summer.