This past Monday, we made our monthly trip to DC. Once a month we trek up there to meet with his transplant coordinator and one of the doctors on the team and they do the same thing that everyone else does: weigh, measure, take vitals, ask if his meds have changed. We don’t mind this trip, though. With the exception of the traffic, we enjoy meeting with his team and we enjoy the cupcakes that we get after each visit.
Here is a little known secret, though. This time, Rusty and I planned to have a confrontation of sorts with the team. This time, we planned to leave that office with a scheduled date for transplant.
Let me back up a bit. We are fairly connected with other UCD families and parents of transplanted children. We also know how to work the website that manages the transplant list. And so, we also know that Matthew has been listed for a really long time. In status 1B terms, for an eternity. We’ve heard that 1B children average a wait of 36 days. Matthew is well past 90 days. We’ve made contact with parents who were transplanted within a week, and those were listed a lot lower than Matthew. It is draining to always feel like this life changing phone call is going to come at any second. The longer we go without the call, the less ready we are and the more we feel like it is never going to come. God has protected Matthew for these last 6 months. He has prevented any ammonia spikes. You would think that this would give us peace and help us to be patient, but it doesn’t. For us, it feels like we are playing Russian Roulette with his health, He can’t keep facing dangerous things and come out unscathed indefinitely. One day soon, his ammonia is going to spike. Our fear isn’t that his ammonia could go up. It is that when Matthew spikes, he spikes high and fast, and it is very difficult to get back under control. Our fear comes from hearing doctors say that he won’t survive another spike. We fear that the longer we wait, the harder it is going to be for him to ‘catch up’ developmentally. We feel that there are a lot of things that we are told ‘we can tackle after transplant’, and we just don’t want to put those things off any longer. So, fueled by fear, we have been having Rusty screened for being a live donor for Matthew. Rusty’s surgeons have been very pleased with his test results and have said that his liver is perfect for donating. Frustrated as we are, we agreed that if a liver call hadn’t come by this months visit, we would ask to schedule the live donor transplant.
I’ve got to be honest. The thought of having my son and my husband on the operating table consecutively wasn’t very exciting. But how long do you let your son linger in danger? Rusty felt like he had to get himself screened and the urge to vomit at the though of it (Which is how I felt when it was first brought up) had left, leaving me ‘okay’ with the idea. So, there we were, ready to put Rusty through an (up to 8 hour) operation followed by Matthew’s (up to 12 hour) transplant.
On the drive up, we brainstormed our ‘plan of attack’. There were things that we needed answered to verify our fears. Was Matthew being passed up? Had children jumped ahead of him on the list? Was his injured brain causing potential livers to go to kids whose brains were whole? What parameters were being used to screen livers? Why were we passing up livers? Can the parameters be loosened at all?
We got our answers, and without the anticipated confrontation too. It is because of his brain injury that he is listed so high on the transplant list. They have every hope of preserving his brain function and giving him a fair chance at life. No one is jumping ahead of Matthew. At 1B, he is listed nationally and livers are ‘handed out’ based on the amount of time that you have been listed. They want to give Matthew the best chance possible at a smooth transplant and recovery, and so, are passing up livers with questionable health histories, livers that were deprived of oxygen for an extended period of time. We are now looking at livers from larger cadaver donors, now that Matthew has grown so much. The only things left to loosen are looking at split or partial liver donations. His best chance at survival is with a whole liver, and since he is holding steady and healthy, they want to continue to hold out for a whole liver. They are just as surprised as we are that the call hasn’t come yet. In fact, they said they haven’t done a transplant in months, but Matthew isn’t competing with anyone else in their center for a liver. The next one up is his!
We had a good, informative talk with his doctor and we left once again feeling sure in our path. We are going to continue to wait for a liver for Matthew. We both feel that this is what God wants us to do. We feel it is what is best for Matthew. It stinks. I’d love for him to be past this zero protein diet, but I’m thankful that he has maintained his health, that he continues to grow like a weed, and that he is no longer vomiting all over the place (have I mentioned that yet? I may need to post about that soon, if not).