Spinning

My head is pounding, my world is spinning, I'm being told my youngest daughter is probably going to die. Stop. Let that sink in. Our baby, the joy, the life, the heart of our home. Our sweet Ashley. 10th birthday? not likely, 8th? don't count on it, 6th? it would take a miracle. A series of miracles one after another after another. Still I hear a voice inside of me saying, "only God knows. He created her. He loves her. He is in control of her days." Its almost a defiant piece of my own soul welling up inside of me. I want to look them all in the eyes and say, "YOU DON'T KNOW! YOU DON'T KNOW HOW HER STORY ENDS!"

Is Ashley Kate dying today? NO. She's not. Her vitals are strong. She breathes on her own. She is living. Is Ashley Kate dying tomorrow? NO. Next week or next month? Dave and I just have to take this part of the journey a day at a time. At anytime she could contract a bug, a virus, an unknown that could steal her out of our grasp. Thats the reality of where we are. Decisions loom heavy and swirl above us. The only thing we are adamant about is getting Ashley home. This morning after her biopsy the GI doctor looked at me and said, "If you want her at home then I think you should get her there." Not encouraging news. Its where we want her, but it also means we have done everything that can be done, there is no treatment, there are no fixes. We are at the end of intervening for now. This is a waiting game. Two weeks out and no improvement can be seen on the screen by the eyes of the experts. Remember that pathology has the final say, but its not looking promising. So...if we wait we can do it here or in her home. The obvious answer is our home. Its not even hard to come up with that one.

The hard parts are organizing it all. Finding who will help us get the supplies, the medications, the infusions, the everything we will require to keep her safe and supported during this whole process. In the words of our transplant GI doc "transplant SUCKS! Its as devastating as being diagnosed with end stage cancers. You never want to hear the words "your going to need a transplant. It just SUCKS."

Options? Do we really have any? Yes and No. So much is up in the air. The main the that we have to do is support Ashley's systems during this whole rejection process. Will the rejection ever stop or is it going to kill her? We had hoped it would have slowed down or stopped by now, but it doesn't look as though it has. Explant? It would make Ashley's quality of life better, stop the pain, keep her from requiring pain control 24 hours a day. Are they willing to consider it? Not at this time. She's too stable. In an extreme amount of pain, but too stable. No explant for her in the near future unless things begin to get even worse for her. Sepsis, constant infections, fluid losses so high that keeping up becomes impossible, debilitating pain(I kind of thought that is what we were seeing, but apparently it gets worse. Something I can't even wrap my mind around). Re-transplant? Maybe. Its a long evaluation process and before it would even begin she has to survive and be stable and infection free for the next 6 months. Its my hope, but probably not reality. If she is accepted and listed again for transplant then we would wait and pray for organs to become available. Then if transplanted she has to survive it. With little to almost no access. One infection post transplant in her central line and it may all be over.

So do we keep her isolated and away from our friends and family or do we allow those who love her to love on her during this time. As hard as it may be to open our home up knowing the consequences, her daddy and I want her to know and feel she is loved. Loved and valued more than anything on this entire earth. She needs to hear the words of affirmation and feel the love we all have for her. We will do our very best to be responsible with her life, but to also allow her to live it.

Spinning. My whole world is spinning out of control. What our normal had become is taking on a whole new dimension and without the miraculous work of our Almighty God Ashley Kate's life will never return to the beautiful place it was just 2 short months ago.

I just can't accept that her best times are behind her. I can't. So we will continue striving to give the very best life possible to our tiny pickle.