Update on Kylie:
Kylie was discharged over the weekend.
I do want to say that TCH (Texas Children’s) ran every test that I requested. Some people from TCH saw my previous post and they came in Kylie’s room with a patient advocate and listened to all my concerns and addressed every question I had. I felt heard and I appreciate that so much.
TCH and CHOR (Children’s hospital of Richmond) will always have a special place in my heart. They helped save Kylie, when UVA laughed (yes, laughed!) and said “she would never get accepted on the transplant list or survive the transfer. She will have do hospice” (I’ll never forget that day, worst day of my life) So I will forever be thankful to TCH and CHOR.
So after running every test possible they couldn’t find any real explanation for why Kylie is throwing up, still has a high respiratory rate and heart rate.
Maybe it all is a bad response to the anesthesia a few weeks ago?
They did prescribe three new medications (that we had to pay out of pocket for again). One new medication for acid reflux, because if it is that then we need to address it before it causes rejection.
We have an appointment with GI to see if they can see anything that was missed.
Last night she threw up so much that it scared me, it was like someone turned on a faucet and it would not stop (all mucus, not feeds).
Please pray that Kylie starts to feel better!
