Some good news (finally!)
And some drama
Kylie has been stable the past 24 hours. This morning they started trying to ween her oxygen and see how she handles it, she is doing well on lower settings so far. She seems so much better
Texas Children’s still wants her there as soon as possible. They are very concerned about what caused this episode. We still do not have any answers on what happened.
Kylie is on multiple antibiotics, high dose steroids and receiving some IVIG treatments. So we do not know which of these medications is helping her but something is (I think it’s God).
Texas has found some concerning issues with her lungs on the rejection side of things (I’m waiting on a conference call to find out exactly what they found).
We originally were supposed to be in Texas next week but everything was cancelled when they thought she had RSV.
After their new findings they are working extremely hard to arrange their schedules and get Kylie O.R (operating room) time to find out what is going on.
The problem we are running into is that insurance does not want to pay for a transfer to Texas because Kylie is stable and doing better.
Texas still wants her there ASAP.
Okay so I’m determined to make that happen. I don’t want another episode similar to Sunday to happen again before she is back in Texas.
So I suggested if Kylie does well on turning down her oxygen and we can get her back to baseline (breathing on her own) then I’ll drive her to Texas.
Texas agreed and said they would be in constant communication and if she starts to show symptoms again for us to pull over at any hospital and THEN they can tell insurance she is doing worse and get them to approve a transfer from where ever we are.
Sounds good. We have a plan.
Except…
DC doesn’t want to discharge her for another week (even if she is back to baseline). They want her to finish the RSV medication (10 days worth). It doesn’t make sense since she has tested negative for RSV twice. This medication can also be given through the G tube so I could continue it if they insist but they want her admitted while taking it.
The transplant team here agreed to do the procedures Texas wants to do but Texas wants her there. (So do I.)
Texas is not happy.
Currently they are hashing it out. Everything is so crazy and all over the place. It feels like a game of tug-of-war.
Nothing makes sense.
Thank you all so much for the donations (link below). This will help us get her to Texas. I want her there so bad. Whatever episode she had was so scary and I want answers. I trust Texas Children’s to give me those answers.
