Saturday, October 29, 2011

Our Journey to Transplant

On Wednesday October 19th Pittsburgh called me and told us they wanted us to be there on that following Monday at 8am. My response was "in like 5 days? Why???" Well after many phone calls we found out that there was some new info they wanted us to see and wanted us to see the transplant team also.

So of course we rearranged our schedules and went. Here's the short version of what we were told. Kids that still have stable but high ammonia (Like Lynlee in the 60's) are showing long term brain damage and/or delay. They also have an average IQ of 75. This scares us! It scares our doctors, and it scared the transplant team enough that they are on board with transplant now.

We left there with a huge decision to make. This decision will change our lives forever. There's no going back after a transplant.

After days of praying for guidance, thinking it all through, and rethinking it we made our decision. We want Lynlee to have the most normal life she can. We HAVE to save her brain. I don't think I could live with myself if she would become mentally challenged because of a decision I made.

So yesterday she was listed on the transplant list. She went on with 30 points. She wouldn't be the first person to get a liver that low on the list, but it's very unlikely. In 30 days we will be bumped up to a 1B and things should happen faster. Most kids have a liver within 2 months after they moved up.

I feel very calm and satisfied with the decision that was made. I know we made the right decision for Lynlee. A decision we can live with. I've very thankful we had a decision to make. We could have walked in there and been told this is what is going to happen to your daughter and you deal with is. But we weren't. We have a choice, and I thank God every day for that.

So now we wait. Wait for the phone call that they have her perfect liver. I'll try to keep everyone as updated as I can by the blog. We welcome your thoughts and prayers and your positive outlook.


  1. Oh Stacey.... You and I are in the same boat... I can only send you both my positive thoughts and love.. I too am scared for what lies ahead for our children post transplant.... I only wish you all the very best, and will have Lynlee in my prayers at night along with my lil Ollie... We only want what is best for our children, I only pray we have guidance to lean on. xo

  2. We felt the same way about L. And even though the transplant journey has not been an easy one, every part of me knows it was still the right decision for L. L currently is sick with a cold, and has been sleeping a lot. It's times like this that I think "I am so glad we never have to worry about ammonia!"

    We saw her blossom in a way she had not prior to transplant. The transformation is amazing to see!

    I will be praying that the right liver comes at a good time for Lynlee!

  3. Kathy- we have each other!!!!

    And Kate- thanks for wonderful post!! Those are the things I need to hear right now!!!