Welcome to Joey’s transplant journey!
Joey is our brave little 1-year old boy. In his short little life, he has already had to endure more than most people we know, and continues to inspire us all with his resilience and strength. We could not be prouder of, or more in love with, our little warrior.
Joey spent the first four months of his life as a very happy, and very healthy, baby. In mid-January 2024, shortly after turning 4 months old, we noticed Joey’s eyes were turning yellow. We felt jaundice was odd given his age, so we called his pediatrician. After a few appointments and an ER visit, he was admitted to the hospital on January 17th for acute liver failure, the cause of which is still unknown. He was listed for a liver transplant on January 20th and was extremely fortunate to receive a donor liver three days later. We were so grateful our sweet boy was gifted with a second chance at life, and looked forward to getting back to our life outside of the hospital.
Joey was discharged in early February, readmitted a few days later for elevated livery enzyme levels, and discharged soon after ruling out all serious complications (such as organ rejection). This felt like a little bit of a whirlwind, but we were glad it wasn’t anything serious, and we could return home. Unfortunately, Joe was readmitted again a couple of days later, in mid-February, for distention. Over the next few weeks, Joey was treated for chylous ascites, caused by lymphatic damage during his transplant surgery.
However, over those next few weeks, his overall liver health was starting to decline at a rapid pace. Joey also started presenting unusual blood lab results. Joey underwent liver and bone marrow biopsies, blood tests, and genetic testing to try to identify a diagnosis. But the medical team was only able to find the existence of some unknown hyper inflammatory immune condition, which they think was impacting the health and functionality of his liver. His doctors have consulted with other specialists in this field, and combed through published research to try to find a formal diagnosis, but have yet to determine one.
Despite the use of multiple treatments to reduce the inflammation, the damage done to his liver was beyond his body’s ability to repair. This was also confirmed with another liver biopsy. So, in late March, Joey was relisted for another liver transplant, suffering again from acute liver failure.
On April 4th, Joey received his second liver transplant. We were so thankful another donor organ was identified, and that Joey was in good enough health to undergo another transplant surgery. He has been home, and progressing well, since the end of June.
The doctors continue to monitor his hyper immune condition. They have yet to determine whether it is an acute or chronic condition. To ensure his second donated liver is not compromised by his immune system, he will receive additional immunosuppressant medications, and could potentially need additional invasive medical treatments in the future, depending on how well the medications work.
While the greatest gift our family could ever ask for is a second (and third) chance at life for Joey, recovery and medical treatments will be lifelong for him. We decided to partner with the Children’s Organ Transplant Association (COTA) to assist with fundraising in honor of Joey, which will ultimately set him up for a more comfortable life as he continues on his transplant journey. Contributions to COTA for Team Joey will only be used for transplant-related expenses (such as hospital stays, follow-up doctor appointments, medications, medical supplies, additional testing and treatments, etc.), and will be made available throughout his entire lifetime. All gifts to COTA are tax deductible to the fullest extent of the law.
We are so grateful for the continued support, encouragement, and love given to our family, and especially to Joey. We are so appreciative that he remains in so many people’s thoughts and prayers, and we find immense comfort in having you by our sides as we navigate these uncharted waters. Thank you so much for following Joey’s journey, and sharing in his story!
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.