Kylie isn’t having the best day today.
It’s weird because one day she will be happy then the next she does not seem like herself.
Today she seems depressed and weak.
I’ve tried getting her on the play mat to play but she doesn’t seem interested.
They are talking about possibly removing the chest tube today so I’m hoping that will make her feel better.
After meeting with transplant this morning, I’m feeling very anxious. We are starting the treatment tomorrow. WE NEED THIS TREATMENT TO WORK!
I don’t even want to talk or think about what will happen if it doesn’t work… I’m going to have faith that it WILL work!
Kylie has AMR rejection and BOS chronic rejection.
After our talk this morning I’m more convinced relocating here permanently is the right decision for our family.
Yesterday, She did do well with the HME with bleed in oxygen. She would try to talk and got frustrated because it wasn’t as easy. Once we switched her to PMV with bleed in oxygen (I didn’t even know they had that) then she started talking more.
PLEASE pray this treatment works! It really is the last treatment we have to slow down this rejection.
I know God can do another miracle for Kylie! And I’m believing that He will!
