Update on Kylie from mom:
Kylie will be transported via med flight to Texas Children’s Hospital today around 12pm.
FINALLY!
We heard from the Kangaroo Crew (TCH’s transport team) and they are heading to DC.
Kylie is still having a hard time keeping her medications down. She continues to throw up with no answers to why. We did a contrast X-ray to make sure it’s not her GJ tube and it is not the reason for her excessive vomiting.
Kylie will be doing lots of tests as soon as she gets to Texas children’s hospital (X-rays, bloodwork etc).
Tomorrow she is scheduled to go into the operating room at 10am to go under anesthesia and have a bronchoscopy.
They will biopsy the tissue from her lungs. The biopsy along with the bloodwork will tell us exactly the type of rejection she is in.
From her latest labs I was told it is worse than chronic rejection, I think they said antibody rejection? I’m not sure, my brain is turning to mush from the craziness of the last week.
The transplant team in DC said there are a couple treatment options if it is that, some are not covered by insurance. The treatment will have to be done in Texas and could be 3 weeks to 3 months. If it does not work then the other option is another transplant.
This is so much to process and I want to wait till I find out for sure before I allow myself to think about it too much.
Once I arrive in Texas I’ll be able to sit down with the transplant team and get more answers.
PLEASE pray that God performs a miracle and it all comes back negative for any type of rejection.
I know He can do it
For ways to help Kylie and her family, the link is below.
Please do not feel obligated. Your prayers are worth more than gold. We love you all
