It’s been an emotional past few days.
I apologize for not updating recently, I didn’t mean to make anyone worry.
Honestly, the fear of what the future looks like for Kylie has a hold on me.
I have faith in God and I trust Him fully but as a parent it is so difficult not to worry about our kids.
My husband keeps reminding me of the woman who had faith if she touched the hem of Jesus’ robe, that she would be healed, and the Roman solider who believed Jesus could heal his servant with one word.
Jesus told them that their faith is the reason they were healed.
I want that type of faith and I’m trying.
Kylie is stable but her ventilator settings have increased since being admitted.
This seems to be her new baseline and she is requiring large steroid doses almost every week to keep the inflammation down in her lungs.
Unfortunately, her baseline keeps getting worse and quickly. This makes all of us nervous.
After much thought, I have requested that Kylie not be discharged.
In order to be a good candidate for a second transplant she needs to be as stable as possible. I feel like her greatest chance of remaining stable is being in the ICU on the hospital ventilator (stronger than ours).
The thought of this makes me extremely sad because I know how hard it is on a family to live in a hospital for a long period of time, we lived the first year of Kylie’s life in the hospital, but I know this is the best chance for Kylie to get a second transplant.
We hopefully will get the results of the antibodies today and that will be the largest decider of if Kylie is a good candidate.
Please, PLEASE pray that the results are positive!
Now, for the few who comment things like “just let Kylie go”…
I ask God for the outcome that I want BUT I also ask for His will to be done.
If God truly wanted Kylie then there is no science that could delay that. He is bigger than all of it.
So, while I respect everyone’s opinion, please respect mine in return and please think about how your words can hurt someone.
As always, we love you all so much.
Also, I will be making a wall of cards for Kylie in her hospital room, if anyone would like to send a card, the address is listed below
Love you all
