Hi everyone-
While Joey is appearing better every day, at this time, his lab results are not improving rapidly enough to indicate that he will recover on his own. With time always of concern, and test results still pending to (hopefully) uncover the cause of his liver failure, he has officially been placed on the transplant list. It is not the outcome we were hoping for, but we are grateful he is good candidate to receive an organ donation. He will be at the top of the transplant list, and our doctors seem hopeful we could find a match in as little as 3 days. Because he is healthy otherwise, we are also hopeful that the transplant surgery and recovery will go smoothly.
Absent of the information they need to treat the root cause, the doctors are continuing to monitor any changes, and correct treatment plans as necessary. He continues to receive treatments to stabilize his liver, which he is handling well. The doctors have also begun treating him with a low dosage of steroids as of today. This treatment could cure him entirely, if his liver is failing due to his immune system going into overdrive trying to fight off a virus of some kind. This seems like the most logical answer, as COVID recently swept through our family at the beginning of the month. If this is the case, we should see signs of him recovering on his own within the next 3-5 days.
Should an organ match become available before we know if the steroids are working, we will work closely with the medical staff to analyze the options and their associated risks carefully before we decide how to proceed. Everything is done on a case-by-case basis, and each will likely require some tough decisions. Should he look as if he is improving from the steroids, and we receive a match that is so-so, we all may decide to pass. If he receives a perfect match, we may go forward with the transplant. We are all trying to avoid a transplant if possible, but our top priority is saving Joey’s life.
There are still a lot of unknowns, which is frustrating as you can imagine. But we have a wonderful team of doctors and nurses doing everything they can to ensure Joey’s safety and wellbeing while new information continues to become available.
We are so thankful to the PICU and Transplant teams, and all of the other medical staff that are taking such great care of our baby. And we are extremely, extremely grateful for all of the family and friends who have reached out, prayed for our family, delivered us things at the hospital, sent us gift cards, are/offered to take care of Draco, created this website, looked into support groups, reminded us to take care of ourselves, and everything in between. The amount of love, encouragement, and support has been incredibly overwhelming- Chris and I are so blessed to have all of you in our lives. We would never be able to get through this without you.
We would never expect anyone to, but for those that have expressed interest in screening as a potential live donor, you can start the process here. Blood type is the first component they’ll likely screen. For Joey, they’ll accept A or O blood types, regardless of whether you are positive or negative. There is a portion on the application where you can identify Joey as the specific recipient, which requires some personal information about him. We do not want to share that information here for privacy reasons, so please reach out to us/our families if you need any of those details.
Please continue to keep Joey in your thoughts and prayers. They fuel our strength to continue this fight.
With love,
The Moschellas
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