To the Brink

Today has been the hardest by far. All symptoms have come to a head and its just scary to watch. There is a list of things we watch for as parents of bowel transplant patients. A list of things that if you see evidence of any of them you call immediately. The list has been put to memory. You know that when items on the list begin to show up you are in trouble.

Today she experienced, and still is, the entire list. I can't even describe how my heart aches, my chest weighs, my head pounds, and my pain feels. It began with grimacing, crying, and complaining of tummy pain. Severe tummy pain. You can read it all over her face. It was followed by bleeding. Her ostomy is full of bloody fluid. Then came distention. Her tummy has grown and is hard and painful. Finally her stoma became hard as well. I sent the nurse out to get someone and she came back alone and relayed this message to me, "Trish, this is what it is and they say its just the beginning. This is rejection. Its going to get worse from here." Instantly a panic set over me. Why aren't they doing anything? Shouldn't we be stopping this? Why is no one concerned? Then the answers. "We are doing everything we can. We can't stop this from happening. We all know she is in severe rejection and this is just what that looks like." So there you have it. We wait. We watch. We wish it weren't happening.

Their best advice was to keep her as comfortable as possible. She is on morphine every 3 hours. Still she moans and moves about the bed and scrunches up her face. On top of the symptoms of rejection that she is enduring we have completely wiped her out with the thymo treatments. Each day we are slamming her as hard as her little body can handle. We are taking her to the very brink, and hoping to get her back. We are doing everything to save this bowel and that means she will be weak and unable to fight any type of infection. The whole team fears that even if we manage to save this bowel, which no one is sure that it can be saved, that infection will take her from us. The wiping out of her wbc is to get the body to stop attacking the organ. It is also what is making her so fragile and so at risk.

At this time they are promising nothing. They can't say much at all. They treat and they will watch to see if any part of this organ comes back. They told me that tomorrow's biopsy means nothing. They don't expect it to be good news. I'm not to let that devastate me. They don't expect it to be any different than it was, but need to check and see. If it is showing signs of regeneration they cautioned me to not get excited. "She has a long way to go to beat this thing and survive." Tomorrow's biopsy is so they can see the actual tissue again. In addition to the biopsy they will take her across to the OR to have her line worked on. Ashley is very, very weak. The thymo has taken everything she had left to offer from her. She doesn't hold her head up, turn herself over, adjust her position or sign. She lies as still as possible on the bed and tries to cope with the pain. She is not in a good place to be taken into surgery, but there is no choice at this time. They have to create more access to stabilize her.

I could keep going. Keep sharing all the scary medical issues with you. I would be up typing all night long. I'm not going to do that. There is just so much going on in her little body at this time. What I want to share most is that I don't know if my daughter will be coming home with me at the end of all of this. They don't really expect her too. Its obvious in the way they speak to me about her. She is in a very dangerous place and I am being warned every time I turn around that she is only going to get worse. They are also telling me that if she survives this then we will be here for a very long time. They want me to know that there is no quick way to heal and recover from something like this. How do I tell her daddy all of this news? How do I share with her big brother that it will be a miracle if she lives? How do I break the news to her big sister that she is so sick and so frail that she may never be the little sister she is used to again?

I'm exhausted. More than that. I don't know how to say what I am. I cry a physical cry. It penetrates every part of me. It hurts so bad. I've never known anything to cause such pain in my lifetime. Every day I watch Ash get worse and worse and tonight I am told that I haven't even seen the tip of the ice burg. My baby is going to the brink of death in order that she might have a chance to continue living. How did this happen? HOW?

To the brink? I think I'm there. One more step and I'm going to fall off the edge. It will take a miracle. Another miracle in the life of my Ashley to give her life back to her.