Living

Blake and I have spent our day in Ashley's room visiting, catching up, and entertaining Ash. I was finally able to talk in detail with Blake. Up to this point all he had been told was that her transplanted bowel had to be removed. Where we go from this point on he was unaware of until today.

There are no experiences in life to prepare you for a talk like this. I had nothing to go back to and draw strength from. Its miserable. Completely miserable to watch one of your children hurt so deeply for another one. Blake is no longer a child. He is an amazing young man with a heart that loves his sisters. Especially the little one. His eyes filled with tears a few times during our conversation and he just like Allison is adamant that we re-list and try again. There is no other alternative acceptable to either one of the older kids. They believe in her and they want her to live. I did my best to explain all that has to happen in order for the team to consider her a candidate for re-transplant. I think that knowing the decision is not even ours to make and that we have no way of knowing how they will vote is one of the hardest parts of this experience. Honestly its miserable. Blake wants Ash to live. He knows and now understands the mountains that will have to be conquered for this to happen, but none of that sways him. He loves her so much and doing nothing to help her is unacceptable. I could see the hurt and the anger well up in his eyes at the thought of allowing her to die of liver failure. Its not ok with him. Its not ok with any of us.

Ashley's biggest obstacle is line access. Many of you have sent stories and messages about children living for years and years on TPN. I know that is true. I hope that Ash can too. The thing that convinces our team that she won't have an outcome similar to these is that she has almost no central line access in which to receive that TPN. Its not making things easy for her, for us, or for them. The other obstacle to this outcome becoming our reality is that she has a transplanted liver that is already suffering from the effects of this past month on TPN. The surgeon discussed with us last Friday evening the condition of her liver that he was able to observe while removing her bowel. We are aware damage has occurred. Her eyes are already yellowing(one of the first things Blake noticed when he saw her), her skin has turned color as well. Her eyes cry tears stained with bilirubin. Her direct bili is already a 4. Her indirect is ranging between 7.4 and 11. Normal range for each of these numbers is less than 1.

We know Ash can do this. We all believe in her. She needs to be given a chance. A chance to live again. Ultimately its all up to God. He controls the number of her days. He controls the length of time her liver can survive on TPN. He controls whether or not she will be listed on the organ waiting list again. He controls if and when a suitable set of donor organs becomes available. There are days when I take great comfort in knowing He gets to decide these things. There are other days when knowing He is the one to decide breaks my heart and challenges my faith. What if He chooses not to give her another chance.

Blake and Allie both understand that re-transplant will separate our family for many, many months and that I will not be there after school, at practice, or games. It is heart breaking and difficult. The emotional strain is so hard, the financial burden is heavy. None of us are looking forward to it, but the alternatives are not acceptable to us. We are all dedicated to Ashley and to her survival. Her life is too precious for us not to fight for it and if you could see the look in the eyes of her big brother and her big sister I know you would understand how desperately we all need to fight.

Living is the goal. Life is a gift. We try not to waste a moment of their lives. Dave and I are so aware of its frailty and therefore we strive to make it all count. Never in a million years would I have ever thought we would be back at square one. I just never thought she would have to tackle transplant again, but its where we are and its what will be required of her.

We just need to be granted the chance. One more time.