Before it gets better

In a perfect world, or perhaps the normal world, or shall I say any world other than the transplant world you would think that getting to the hospital and receiving treatment would help you get better. You know, help your status to improve. Well...in the world in which transplant patients reside this is not the case. Before it gets better they usually get worse.

Thats the story of today. Ash is getting weaker, not stronger. She is slipping ever so closely to the edge of instability rather than stability. The Thymo infusions are hard on her. They are taking hours longer than we would prefer keeping her off of fluids for more than 10 hours today. The drug has caused her blood pressures to drop and combining that with no fluids she is struggling to maintain them tonight. She has had blood pressures taken every 15-30 minutes for over 12 hours now. Its so unfair. Her central line does not draw blood. Not easily any way. I prayed over that line and it gave up 1 1/2ccs for tonight's labs. They wanted to stick her, I was fighting so hard for her not to have that happen. Her body looks as though she was in a fight and lost. Severe bruising. I need this central line to work. We will have to discuss that in rounds in the morning. She didn't go through surgery last week and all the trauma to her groin, abdomen, and chest to have a line that won't draw blood. She was just given yet another 300ccs of albumin and is now receiving 300ccs of saline. We are teetering so very close to losing respiratory status by pushing these large amounts. Her body is being slammed with these fluids in an attempt to raise her blood pressures and get her to make urine. WE need them to go to the right places. If they try and transfer into her lungs we are in big trouble. What a dangerous game we are playing. So very dangerous. Ashley was making strides forward on her fluid status, but tonight she is very, very dehydrated. Its so frustrating to see her get worse and worse. My hope was that she would get well. I'm afraid she may go the other way, but currently she is holding on and breathing on her own. We are watching her lungs closely.

We are already experiencing difficulty in treatment because of her lack of access. Things are backing up and we aren't able to keep up because everything has to wait its turn. Its really scary.

If we were to lose this bowel and need another transplant they may deny listing her because of her lack of access sights. Without access it would be impossible to pull her through the dangerous days of post transplant recovery.

Knowing that her life is dependent upon this graft survival is suffocating to me. I feel pain in my chest. Heavy, hard to breathe pain. I really don't know how we will survive if anything happens to Ashley Kate. It wasn't supposed to be like this. She fought hard. She's already been through the battlefield and came out scarred but alive. Why does she have to go there again?

The real truth is this... they do not know how this is going to play out. Only 50% of the patients who undergo bowel transplant live for 5 years. Only half. Ashley Kate is approaching year 4. They are shocked to see such severe rejection of the organ so far out from transplant. Today the surgeon told me they have only had about 10-20 patients present this way. She has become a member of a small club. One I would have never chosen for her to be a part of. The outcomes are rarely good, but thats not to say it can't turn out good. They could think of 2 patients who had been re-transplanted that made it and are out living life. Surviving. Those numbers hurt. Its not going to be easy.

My kids now know. Its a whole other post that I just don't have the energy to write. Just know that we are all hurting. Our sweet Ashley in her physical body, and the rest of us in our hearts.

Its going to be a long night. Another long night to follow up this long day. Needless to say we still reside in the PICU.