Yup, Philip was sidelined.
We met with Mt. Sinai last week and they said this was a possibility. We were trying to go forward with Living Donor and they had said they didn't want to do it this early as well.
So, Just as he got into the transplant game, and was listed, we got word today that he has been de-activated from the list. Now don't get me wrong, this is a good thing. This means he is too healthy to be considered for a transplant at the moment but I can't help but feel disappointment and frustration. Its hard to put into words, but having him listed gave me a feeling that things were moving forward. Things were being done. We had a plan. I mean I fully understand not wanting to do it too early so he can grow more but we are pushing off the inevitable. I don't want to trade one set of problems for another but its hard to not feel like "Lets get this show on the road" and start our next chapter and give him some relief. Why wait till he gets more sick?
You would think it would be better to do while he is fairly healthy. But they don't want to put him or the living donor at any unnecessary risk.
And by too healthy, I mean by the numbers. The parameters for listing don't take into consideration the varices in his esophagus that had to be treated again after the last free and clear one or that he needs to have yet another endoscopy again next week.
It doesn't take into consideration how the poor kid rips his poor legs apart from them itching so bad, or the sheet burn on his nose from rubbing his face back and forth to scratch his face from the itching.
Or how he is up multiple times at night crying, sitting in the dark scratching himself.
The doctors need to appeal for these to be considered, and they don't feel it is necessary at the moment.
So we will continue to wait it out and learn more about the transplant game and just be grateful and enjoy that he is still happy and healthy at the moment, as we've learned that it could always change with a drop of the hat with this disease.
