Kylie is NOT happy.
She is not happy about doing the acid reflux test. She hates having the stuff on her face and having to wear the No-No’s on her arms.
I ended up taking the No-No’s off and promised the nurse to keep a close eye on her so she wouldn’t pull the probe out of her nose. She looked so miserable and my heart couldn’t take it.
The team did a deep dive into looking at Kylie’s heart and all the tests came back negative. So Kylie’s heart is doing well. Thank You Jesus.
ENT did come and took a really good look at Kylie’s trach. She did need a bigger size because it seemed to be hitting the wall and that could have contributed to the episode over the weekend.
Our transplant team thinks Kylie’s baseline may have changed again. She will be needing full vent settings at home now. Her baseline changing so quickly is not good.
Everyone is certain the rejection is to blame for the rapid decline and the episode the other night.
So.. that has us having some difficult conversations.
They will retest her antibodies in about two weeks. After we get those results there is a good chance we will start the evaluation for a second transplant.
With Kylie not being exactly stable, this hurts her chances of being approved for a second transplant.
However, I know a God who can do anything!
Please pray that we can get Kylie to a stable place
As always, we love you all so much. I am eternally grateful to each of you, the love, prayers and support mean the world to us.
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