So we are delaying the start of the treatment for rejection.
Kylie has been really sick the past 24 hours and we have no idea why.
She has low blood pressure, requiring more oxygen, high heart rate, heart murmur, very clammy, sweaty and she has not slept in over two days at all.
It’s sad how scared I was to mention my concerns with starting the treatment with her not being herself.
I still get worried to speak up sometimes after everything that happened with VCU.
But as soon as I said something the whole ICU team jumped and completely agreed with everything I was seeing last night. They didn’t make me feel crazy or that I was over reacting.
They are running every available test possible.
The Transplant team came in this morning and agreed how awful she looked so they decided to hold her treatment for now.
They were able to remove the chest tube this morning.
Even after a dose of morphine and increasing her sedation she still couldn’t sleep.
Also, once she completes the first step of the treatment and she is monitored for a few days after in the ICU, they said we could be discharged sometime next week possibly and then do outpatient labs to see if the treatment worked.
Then she will need to come back after two weeks for the second part of the treatment.
I did ask if we could go home for a week to try to pack for the big move and they said they want her close to the hospital for three months because of how strong this treatment is and for labs etc.
So we are looking for somewhere to stay until we find a new home (we have found one we really love, just waiting to finalize everything) and all the charity housing is full right now. But we will figure it all out.
Thank you all from the bottom of my heart for all the love and support.
We love you all so much!
Please pray that we can figure out what is wrong with Kylie and treat it so she can begin this treatment for the rejection.
Address on wishlist updated to come to us in texas
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(Venmo, cashapp etc).
(Click link below) 
Prayer Warriors – let’s stay vigilant in our prayers for this sweetheart!
Lonnie
