Wednesday, May 18, 2011

Emotional Rollercoaster

If I had blogged this time last week I would have been sure by today Lynlee would be on the transplant list. We would be waiting for the perfect liver. I would be writing about me feeling scared but confident with the decisions we made. However, this blog is nothing like that.. Let me back up for you.

Last week was busy, long, and very overwhelming. We had appointments every day starting at 8am and lasting until at least 2pm. Some appointments were classes about the surgery, how much it would cost us, how to handle it, and some were Lynlee getting her EKG, ex rays, etc. Other than Lynlee falling in the hallway, biting her lip, and us ending up in the ER the week went off great (no stitches need, just lots of blood.) Ryan and I had left there on Thursday with the decision that we were going to list Lynlee. We felt and still feel that she will one day need to be transplanted. It's better to transplant early for a majority of reasons. One, she won't remember it. Two, she is healthy now, and healthier babies come out of transplants better, and three, she doesn't need a liver now, so they can wait for the perfect liver for her.

We were told that "they" meaning all the teams we met with would get together and decide what was best for Lynlee and they would call us Monday to give us the answer. If they said transplant, and we agreed she would be listed on Monday. I was shocked on Friday night when they called to tell us that they felt Lynlee didn't need to be listed yet. We would evaluate again in three months. She won't have to go through all of that again, just meet with the transplant team.

Are you confused with this yet? Yep, me too!!

I finally talked to them again today. I wanted to know why we were turned down after they pushed for this, and I wanted to know what has to change in 3 months for them to list her. Here's the answer I got: That they feel she is stable enough now to wait. They don't feel like transplanting her right now is needed. They want to watch her levels over the next 3 months and go from there.

I know I should be jumping up and down with this news. It's great news to be told we can wait. I should be sighing with relief, but I'm not. I'm not sure if it's just because I finally had my mind set with transplanting, I was finally okay with that decision. Now in three months I'll have to go back to that place and find comfort in that decision again? Or I guess we could be told to wait longer. I just feel like we've been on an emotional roller coaster, and I'm ready to get off of it.

We are back to waiting. I should be good at it by now, right?

1 comment:

  1. Late reading this! Glad they think she is stable to wait...but am super surprised as I haven't heard of any UCD child that has been told to wait longer (not that I am the expert!). Wishing you peace as you wait again!