Update on Kylie:
Bye DC!
HELLO TEXAS!!
The flight will take about 5 hours, so they will be there tonight sometime.
My son woke up this morning with a fever of 102 (no other symptoms). After giving him Tylenol at 7am the fever has not returned.
If he remains fever free (don’t want to get Kylie sick) till the morning then we will load the car up and head to Texas!
We do not have a new date for the O.R yet but hopefully while we wait we can get some other answers.
They are concerned about her Tacro (rejection medication) levels. No matter how much they give her it will not go up. They have given her two extra doses (on top of her normal two) in 24 hours and still no change. They have been doing this for days and both transplant teams can’t figure out why there is no change. They are going to try to change out her GJ tube to see if that helps but everyone is confused.
Also, every charity and resource our social worker has given us for lodging is full and has a waitlist. She said this is their peak season.
I’ve applied to a few places and called around with no luck.
I’m just so happy that Kylie is on her way to Texas Children’s that I’m not worried. God will work it out. He always does
TIME TO GET KYLIE SOME HELP! Yay
Please pray for a safe flight for my miracle baby and my husband
GoFundMe/Venmo:
