I wish it were easier...
but I'm afraid its never going to be.
After several conversations with our transplant team yesterday and today I was informed that they have decided they can't help us with Ashley Kate at this time unless we are willing to bring her to them so they can put their eyes on her. Basically they have opted out on this one. No direction or consulting any further at this time. They will continue to follow her labs( I really have no idea why), but want her local team to make the decisions regarding her care. This is basically what we have chosen to do anyway, but it was always nice to know they were there to give advice or offer suggestions. After reviewing her case this morning I've been informed that since we aren't taking her to Omaha then they aren't comfortable following this current situation with her liver.
I'm not sure how I feel about this. Conflicting emotions. At first I felt as though I were being given an ultimatum by them, but I don't think that is the case. I'm feeling a little abandoned by people whom I've trusted for more than 6 years of her life, but there isn't much that can be done to remedy the situation we are currently living with. We are not willing or ready to have Ashley listed on an active transplant recipient list. I think we are far from that. Without taking her back for re-eval, then I don't guess there is anything they can assist us with any further.
So we are left with many difficult decisions. Decisions that make me sometimes feel as though I'm being backed into a corner. I simply have a gut feeling about transplant and I'm going to follow my gut. Its not time. It just doesn't feel right at this time. I think there may come a time that if feels right, but that time is not now.
Ashley's liver isn't healthy. We've known that for a long time. For a couple of years now. But...I've seen her liver be in a worse state than it is at this time. So...I'm not afraid. Not yet. I think we have time. Time for it to perhaps reverse whatever is going on.
There are 3 or 4 possibilities going on in her liver. The first that came to everyone's mind was a case of acute rejection. With the rate of the changes this is a likely possibility and what we have been treating her for. The second is disease progression. Ash has been on TPN for more than 2 years now. TPN is toxic to the liver. This was the original cause of her native liver failure. The third cause could be a blockage in her bile ducts. We will be able to determine this with ultrasound. Lastly the cause of the changes could be an infectious process somewhere inside of her. Line infection is the most likely, but it could be a viral infection or something along those lines. It sounds funny to say, but we are hoping for an infection to be discovered. Something that we have a chance to treat and beat.
The earliest we can do anything at this time is Monday. I have an appointment scheduled for her in Shreveport. From then we will decide if we will continue with a liver biopsy or not. I'm confident we will do an ultrasound. The transplant team is deferring all decisions and case management at this time to our local team.
Other than the extreme swelling of her face and the discomfort it brings I think she's doing really well considering whats going on inside of her.
The decisions we face are unimaginable. I truly have no peace or confidence in bowel transplantation for Ashley at this time in her life. She still has an amazing quality of life and I am not willing to sacrifice that. If she begins to lose that quality of life and we are forced to choose between watching her die or attempting another transplant then I know we will choose the glimmer of hope that new organs may provide. I'm just not going to list her today.
I haven't even discussed the complications of no line access in this post. Things are more and more complicated every single day. I could write for hours and hours and still not be able to share everything that goes into caring for Ashley Kate. It is so very complex.
If you could see her at a pep rally and watch the joy on her face as she dances along to the sounds of the drum line, or if you could lay in your bed at night and listen to the sounds of her laughter spill out into the hallways of your home then I think you might have a small understanding of how and why this is so very difficult. I can't sentence her to living inside the walls of a hospital when she has so much living still to do on the outside of those walls.
Answers don't come easy. We lost that luxury the day we found out we had no more access and when her bowel was ex-planted. From here on out we live everyday as if we were out of time and yet still try to keep from making decisions for her based out of a fear of losing her.
I wish it were easier.