Looking at Grayson, you see a healthy, happy and beautiful baby boy. Despite it all. Beyond the surface Grayson suffers from a rare and undiagnosed pediatric liver disease resulting in near complete absents of his bile ducts. We've faced numerous possible diagnosis each one more terrifying than the next. After hundreds of blood test, dozens of imaging scans, genetic testing and more doctors than we can remember, every possible diagnosis we were given was ruled out.
Grayson defied the odd for longer than any of his doctors expected, thriving, meeting milestones, growing as he should. In the past month Grayson has taken a turn. He is now in stage 4 cirrhosis of the liver; he has rapidly progressing portal hypertension, portal gastropathy and has begun developing esophageal varices. Within a months' time, Grayson's conditional has gone from bad, too much, much worse.
His Doctors at MUSC Shawn Jenkins Memorial Children's Hosptial have said the path Grayson is on ultimately ends in a liver transplant. We were told this could better his condition however it comes with a whole new series of complications and possible outcomes, life after transplant will be a journey in itself. Before Grayson is able to be considered for transplant his case must go before the transplant board for approval. His team at MUSC has informed us that until he is eligible for transplant our best and only course of treatment is to wait. Eligibility could take months if not years in that time we wait for his condition to worsen. The progression of liver cirrhosis to liver failure is ugly at best. Grayson's jaundice will return, his abdomen will continue to swell, his pain and discomfort will transition to constant pain and discomfort. During this progression he will develop secondary problems as his body tries to compensate, these compensations have already begun. He has developed varices which are secondary vessels his body is creating to compensate for the pressure within his portal vein. These delicate vessels will begin to rupture once the pressure become too much to sustain. When the happens, Grayson will begin vomiting blood and having bloody stools. This is what we are waiting for. This is our landmark for liver transplant. I can only pray that God will hold us in these moments.
I continue to rely heavily on my faith as we wait, but I would be lying if I said I was not afraid or that I do not fear the possible outcomes for Grayson.
I believe God is calling us to Cincinnati Children's Hospital, as they have already played a vital role in Grayson's journey, they are also recognized as the top hospital for pediatric liver disease. As we began fundraising for this journey, I very quickly realized I have no idea how to ask for help of this magnitude. This journey will cost thousands of dollars. I would never expect donations of that size, however if your able to donate just a few dollars those dollars will add up. Those dollars will allow me to take Grayson to the very best hospital available. Your donation will help us find answers; your donations allow us to seek treatment outside of "Waiting". Because as a mother, I am not designed or equipped to sit idle as my baby inches closer to death. There are other options, I just have to find the right doctors to help us fight the unknown. I believe Grayson's miracle is waiting within the doors of Cincinnati Children's Hospital and today I ask for your donation to help in going to get it.
