So much for being discharged tomorrow.
For two main reasons.
1. Lynlee tested positive for EBV. I know most of you have no clue what the means and well to be honest I didn't either until today. So here is my best attempt to explain it. They test the donor for EBV and CVM. If the donor is positive and Lynlee negative or vice versa then they do antibiotics at the time at transplant. Or if they are both negative and Lynlee becomes positive then she could get really sick with crazy levels. Well they didn't know the donor had tested positive until today when Lynlee's EBV tested positive. So instead of her being on the antibiotics for two weeks like they would have liked we started them today with an elevated EBV level. To get the level to come down they lower the Prograf (her rejection meds) plus start on the IV antibiotics. It's not a huge deal but anytime they lower the Prograf she could have rejection.
2. Lynlee has had diarrhea all day. They arent' sure if this is from the formula change, the EBV, or a new med they started her on.
Sooo.... We will be here probably throughout the weekend.Monday is Martin Luther King Day so another holiday and clinic will be closed. Hopefully next week we will be our week. I'm actually glad it happened this week instead of next week after we got released and us have to come back. I'd rather just stay here and get it over with.
It definitely taught us to take it one day at a time. Not to get over excited or ahead of our self.
Before I call it a night I want to tell you about this group I ended up at today. Lynlee and I were walking around the hallways and the coordinator invited us in to an "informative" group they were having. So we went in. It ended up being more of a support group. Everyone told their story, how they felt, all they've dealt with etc. I think I could have probably done without the group however, I learned one thing. Ryan and I have are truly truly blessed. We have each other, we have an amazing family, a wonderful support system with our family and friends. I don't know how these single moms do it. The ones that are miles and miles from home, never leave their kids room, have no breaks, no family, no one. My heart breaks for them.
So keep us in your prayers. Pray the EBV level goes down with no rejection. And pray for those single moms and the other families in here that aren't as lucky as that have an amazing support system like all of you reading this.
We truly appreciate all the prayers, and cards and gift boxes, etc. Words can never express what you guys mean to us, and how far you've got us.
We love you.