The month of May has brought a whirlwind of challenges for Amari and his family. He was scheduled for a liver biopsy and MRI due to unstable liver enzymes, the doctors were searching for answers, concerned about possible cholangitis—an infection in the bile duct system. Amari’s liver issues are fairly new to his journey. These new developments added to the worries of his mom, who diligently keeps track of his health issues.
The MRI revealed a small cyst on Amari’s liver, a result of the NPHP3 genetic mutation causing his polycystic kidney disease. This mutation can impact his brain, eyes, liver, pancreas and kidneys, complicating even post-transplant outcomes. The news echoed past anxieties when they discovered Amari’s kidney failure at stage 5, with just 10% kidney function. Mom feared a similar decline in his liver, but doctors reassured her that while serious, his liver won’t deteriorate like his kidneys did. They advised against a dual transplant unless Amari faces recurrent cholangitis.
They have decided to move forward with having the transplant done in Cincinnati. The decision was made at the end of April, but the team wanted to wait for his biopsy and MRI results before presenting him to a committee to be placed on the kidney waiting list. Before being presented to a committee you must do a full evaluation and be cleared by all the necessary doctors to make sure that Amari is completely ready to undergo a major surgery for the best outcome. They are currently waiting to hear from the doctors in Cincinnati.
As May transitioned into June, Amari’s health took a downturn. He became lethargic, drained of energy, and unresponsive to his usual playful self. Mom’s concern peaked; she persisted with doctors for almost 2 weeks, who told her that all of his labs/tests are normal and they weren’t concerned. She decided she was going to take him into the ER anyways. This led to an immediate admission to the PICU due to unstable oxygen levels and low blood pressure. Antibiotics were administered, and after a tense 18 hours, Amari began to show signs of improvement. The exact cause of his illness remains unclear, but thankfully, after a little over a week, he was discharged home.
Some of Amari’s family’s close friends wanted to take them to Myrtle Beach this month. They haven’t had a vacation since Amari was diagnosed. They were all looking forward to being able to get away and have some fun. It was a tough decision, but mom couldn’t risk taking him that far from his medical team.
While this past month has been extremely stressful, the family remains anchored by hope and resilience. The strength they exhibit in navigating these turbulent times is remarkable and inspiring.
For those wanting to rally around Amari’s journey towards his kidney transplant, donations to COTA for Amari’s Journey are greatly appreciated. Stay updated on his progress through his Facebook profile, where his day-to-day journey is shared.
[If you would like to donate to COTA for Amari’s Journey as he awaits his kidney transplant, please visit: https://cota.org/cotaforamarisjourney/
Join Amari’s journey on Facebook to stay updated on his day-to-day life and continue showing your love. Follow this link to his Facebook profile: https://www.facebook.com/profile.php?id=61556251717859]
