We need your prayers.
It’s been an extremely busy week and I’m exhausted.
I am finally back in Houston with my babies
That drive from Virginia is extremely long and I arrived early this morning.
Kylie was negative for sepsis (Thank You Jesus) and a repeat viral panel showed rhinovirus.
She is currently needing higher respiratory support but the team suspects that’s a combination of lack of steroids and rhinovirus.
Kylie is needing a large dose of steroids every two weeks, this is on top of her daily steroid dose (which has been increased) and inhaled steroids.
With Kylie requiring such a large dose of steroids to control the inflammation in her lungs, this has the team concerned. That is not a good sign.
We will continue to wait to see if the treatment worked but with Kylie not improving, our doctor is going to start discussing a second transplant with the whole team this week.
We would have to do the whole evaluation process again and the entire board would have to vote on whether Kylie is a good candidate or not.
The thing that really hurts her chances is the antibodies in Kylie’s body.
If the board decides to list her despite the antibodies then it would eliminate 60% of the potential donor candidates (according to our doctor). Which means she could be waiting a long time.
I can’t even believe we are even at this point and discussing a second transplant more and more…
Despite Kylie not showing any improvement, I am holding onto faith that the treatment worked. I desperately want it to have worked.
PLEASE pray harder than ever for Kylie and that we will start to see improvement, telling us that the treatment is working. Please please please pray. I know God can do it.
As always, we love you all so much
