I get asked almost daily this question. I guess I don't have the answer because I always hesitate to answer it. The truth is I just don't know when. We don't know and there is no one who can tell us when.
When we will go back for transplant?
If I could have things my way I would say "never!". That is my want. I don't desire to do this again. I don't look forward to seeing her teeter between life and death. I don't want to have to be concerned on a moment by moment basis if she will ever wake up and breathe on her own or if she will ever make it back on that plane headed toward home again.
We have so many questions. Questions that no one is willing to answer for us. Not yet anyway. I suppose my best guess is that maybe in November or December we will go to Omaha for an evaluation process. This trip means nothing more than that. Evaluation. They will have Dave and I meet with financial counselors, psychological counselors, social work, nutritional counselors, and surgeons. They will run tests on Ashley Kate. She will be examined by a neurologist(not my favorite person in this whole equation!), by surgeons, by interventional radiology, and by vascular surgery. This process is different than her first one. Its obvious she needs the organs. That is not the issue. Our biggest hurdle to overcome in order to be listed on the organ transplant waiting list is line access. She can't be transplanted with a hepatic central line. They will be removing the liver and replacing it with another one. That means that once they take it out there is no support site to keep her alive during the operation. The only way she can be transplanted is if they can find access above her diaphragm. Currently its all blocked, but they are going to evaluate to see if they can "break" through one of those blockages to make a way to insert a central line. Its really scary. Not only for the operation, but also for the post operative period of healing. If history repeats itself, transplant children battle multiple rounds of sepsis from infected central lines in the post operative healing phase. If this happens and the "hopeful" line has to be removed where will they place another one to support and keep her alive? There is not another place to go. Not only does Ash need to survive transplant she needs to come out of it and not get ANY infections in her line or blood stream. This will take a miracle like you have never seen. Dave and I know this and the knowledge we have from experiencing it with her once before is crippling. If you haven't been with us long, you are welcome to go back to the early days and read the ups and downs of healing from bowel transplant. Its not an easy read, but will give you an understanding of what our Ashley is facing. The biggest factor in deciding if she is a candidate for being re-listed for transplant is line access. We believe the team will agree to try if they can establish access. Its just not going to be easy.
So...once she is listed what happens? We wait. It could be days, weeks, months, or years. There is no time table to measure it by. Dave and I suspect that it may take longer to receive organs this time. Just because of her age. She was transplanted at 14 months the first time and weighed about 12lbs. The donor must be 20% smaller than the recipient so that pretty much meant it was a newborn donor. This time she is 5 years old. You can figure out where I'm going without me needing to say it. Our first time on the list was only 20 days. Because of this we are in a hurry to be re-listed because the waiting may prove to be difficult depending on the status of her current liver. She may or may not survive the waiting period.
On the other hand we are in no hurry. No hurry to leave again, to separate our family, to watch her endure such pain. We do not wish to go through this again. If she had multiple access sites left then I can tell you that we would wait. We would give her more time at home to grow up and be a little girl before taking her back to the hospital. There is no question in my mind that I would not be in a hurry to repeat this nightmare. The fact that she is living with this one and only line site is dangerous. At any given time we could lose this line to infection. Add to that the fact that her liver is very, very sick and won't hold on indefinitely and we don't have much time. How much time? Only God knows. Truly, there is nothing more than a guess that can be made by any mortal man.
Our only hope at having the opportunity to watch Ashley Kate grow up is survival of yet another transplant. I hate knowing that it is really our only option. The other choice is not acceptable for us. We do not wish to watch her die a slow, painful death from liver disease.
This is the best answer I can give at this time. Its confusing and complicated and not really an answer at all. These are the things that I push out of my mind every single day and I desperately try not to dwell on them. I wake up and live life as normally as I can and "pretend" that all is well for us. We have been given this time together and a few months ago I didn't know that we would ever have another day to spend together as a family of five. I just keep doing the best that I can. Not much else I can do.