COTA for Alex's Journey

Our Story

Alex is a 17-year-old High School Senior, and his transplant journey started on July 26, 2023. We were not prepared for this journey, never had we ever dreamed Alex would need an emergency liver transplant; Alex had never been sick or showed signs of liver failure until July 26th. 

On July 26th Alex met me (Mom) for lunch and as we were talking, I looked at Alex and asked, “why are your eyes yellow?” Alex said, “I don’t know.” I told Alex that I had a feeling that there was something going on with his liver or gallbladder. I immediately called his doctor, and we were able to be seen within the hour. The doctor completed an examination and had blood drawn and told us to wait for the lab results and they would call for the next step. On July 27th, I was looking at Alex’s blood work and noticed the values were abnormal (I’ve been a nurse for 23 years). I called the doctor’s o?ce to see what the next steps would be. The doctor called me back and reported that she had been on the phone with Riley Children’s Hospital, and they were requesting that Alex get to Riley.

Upon arriving at Riley, we were taken into the emergency room where Alex was evaluated. Alex was seen by the GI Team and an ultrasound was obtained. Alex was admited to Riley on 9 East. This is when things started to become a blur for all of us. Alex was laughing and joking, we would order Doordash for our dinners for two nights. Then on July 28th the GI Team came to us and said that they needed to inform us that we needed to possibly start thinking about a liver transplant, we were in shock. GI Team said they did not know if it would need to be done immediately or later, but they wanted to do a liver biopsy to see what the next move would be. Alex became upset and I explained that this would be a life-saving surgery and it needed to be done and that we all wanted to be tested to see if we were at match. Alex told us no because he didn’t want us to risk our lives. I told Alex I would give my life for his and he still insisted that we not donate. Alex said that he would accept a donor’s liver and wanted to get it done as soon as possible. On July 28th Alex had a liver biopsy that showed signi?cant damage to the liver, and they believed it was related to an autoimmune disorder — we never knew Alex had any autoimmune issues. Later that evening Alex became confused, and his ammonia level was increasing, he was moved to the PICU, and at this point Alex was in septic shock and very ill. Alex was placed on the top of the National Transplant list on July 30th. Alex was very critical and needed a liver quickly to save his life.

On August 1st, PICU physician, Dr. Friedman had a conversation with us and told us that Alex needed to be intubated to help him breathe so his body was not working so hard. Alex was intubated on August 1st, and we were then told a few hours after intubation that a donor liver had been found. On August 2nd Dr. Friedman said that he had been speaking with transplant surgeon Dr. Richard Mangas and they are recommending that Alex go to the OR and have his liver removed now and once the donor liver arrived, they would take Alex back to the OR for the transplant, they wanted the liver out because it was poisoning him. Dr. Friedman said that this was a “hail Mary” and could not guarantee the outcome, this is before the donor liver had even been procured and nobody could tell us when the liver would arrive. I just remember telling Dr. Friedman to do whatever they could to save my child’s life. Alex was without a liver for 12 hours, the surgery was successful, and we had a hero that we never met, but we were told the next 24-48 hours were very critical, it turned out that the next few weeks would be critical. Alex was placed on continuous dialysis for weeks to help his kidneys heal; they had taken a big hit during the septic shock state. Alex’s blood pressure was very low, getting to 60/20. Doctors and nurses were doing everything they could to help Alex survive. Alex was being weaned o? the ventilator and ended up with pneumonia, so he needed to be kept on the ventilator. Alex eventually would get a trach to get the ET tube removed from his throat.

Alex made huge accomplishments in the PICU and was removed from continuous dialysis, taken o? the ventilator and was breathing on his own. Doctors have been calling Alex “a miracle.” One doctor told us that Alex was one of the sickest transplant kids they have had to survive. We put our faith in God and let him take over and guide us. On October 2nd Alex was moved to acute rehab at Riley where he is now exceeding expectations. Alex is now walking and talking, and he will go for a sleep study to see if he can have his trach removed before going home in the middle of November. The PICU Team comes and visits Alex in rehab and they still are in shock at how great he is doing. They tell him everything he has been through, and Alex doesn’t recall a lot from PICU, but he knows the people who saved his life. 

They say you cannot love someone you never met, but that’s not true, we will always love Alex’s Organ Donor, they gave my child a second chance at life, and we are forever grateful for our HERO.

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.