Update on Kylie from her mom:
Y’all! This week has been so wild.
We also received some very terrifying news from our transplant team.
Our transplant pulmonologist at TCH (Texas Children’s Hospital) called in his connections at Children’s National in DC, he spoke with the head of the transplant department and got him to agree to release Kylie today (Friday).
She is able to breathe on her own but she is non stop throwing up mucus (31 times in 24 hours) so something is going on with her lungs. This is not normal for her at all, even when sick.
We will be leaving DC in a few hours, we pass right by our house on the way to Texas, so we will stop and pack a few things and give my oldest baby (McKenzie) a kiss and hug goodbye. She loves staying with my parents because she says she gets to be an only child again .
I hate leaving her but she has school.
Side note: during this crazy week at the hospital I was able to do a zoom meeting with Kenzie’s school about her IEP (for her autism) and she was found eligible! It went smoothly and I’m so excited for her to get some help
We will then drive straight to Houston, it takes about 26 hours. We worked with the social worker in DC and all the charity flights that I saw recommended in the comments, I told her about. She looked into them and said they can only be used if Kylie is getting worse and needs a higher level of care (just like insurance said). I’m not sure if that is accurate or not?
On Wednesday we had a phone conference with our transplant team. They told us that the blood that was taken from Kylie last week showed antibodies attacking her lungs again (a lot more than before). They also found a new type of antibody attacking the lungs, a very dangerous antibody. When I asked if this antibody could cause acute or chronic rejection, they responded that it could cause something worse than chronic rejection. I didn’t know there was something worse than chronic rejection?
They are very concerned.
I am anxious to get Kylie to Texas and get some answers. I was so excited when they told us she didn’t have any antibodies anymore a month ago. I feel so disappointed, but I refuse to give into whatever the devil is trying to do.
God will have the last say. He is not finished with Kylie. Even though I’m terrified and my nerves are wrecked, I’m going to trust Him because that’s all I can do right now.
Again, Thank you all so much for your donations (link below). I can’t express how grateful we are for each of you. We don’t know how long we will be in Texas and your generosity has taken such a huge burden off our shoulders. The relief it has given me brings me to tears and leaves me speechless. Thank you all so much. We could not do this journey without each of you.
We love you
Please continue to pray for Kylie
**Im so sorry that I have posted so many updates this week. I try not to spam you with updates. I know you all love Kylie (we love you all too) and I don’t want anyone to worry. — at Children’s National Hospital Washington DC.
