Our sweet rainbow baby, Kai, was born in May of 2020, just weeks after the Covid-19 pandemic initially locked down most of the world. After 32 weeks of a “perfectly healthy” pregnancy, I was told Kai’s chance of surviving more than a day or two was suddenly in the single digits. Words cannot describe how devastating that was to hear for the first time. Kai was diagnosed before birth with a rare kidney disease called Autosomal Recessive Polycystic Kidney Disease (ARPKD). Because of this, he was born with severely underdeveloped lungs and large, cystic, non-functioning kidneys. After weeks of testing and scans, he was also diagnosed with a secondary heart abnormality that would surely seal his fate. This information came unexpectedly and without any way to help him until birth. Due to COVID restrictions, my husband Kris was never able to go to doctor appointments with me. Specialist after specialist told me he would likely not make it past the first few days of life due to his condition, but to “keep hope”. Kai is an absolute miracle child, and he’s the bravest boy I know.
The name Kai means “warrior”. He truly has fought for his life every day since birth. Kai was in the NICU at Phoenix Children’s Hospital for 74 days before being released to continue his intensive medical care at home. For nearly three months, Kris and I drove an hour each way every day to “swap” places at the hospital so our boys always had one of us, despite Kai’s older brother Kanyon never being allowed into the hospital to visit his brother. No grandparents or other visitors were allowed to see Kai, so we knew it had to be done this way. One of us slept at home with our son Kanyon, and the other slept on the hospital couch beside Kai. Those 74 days were filled with countless tears and several weeks on a ventilator. His first nephrectomy was at just two days old, and he started dialysis at just six days old. No one thought he would survive. Even now, at eighteen months old, this sweet little boy has not slept a single night of his life without being connected to a machine, and the dialysis whooshing fluid in and out of his body causes him to feel nauseous nearly all of the time. He vomits 5, sometimes 10 times a day. He wakes up screaming from the pain of fluid exchanges as his treatments run throughout the night. His recurrent infections this past year have severely delayed his global development. But despite all of his battles, we are hopeful that a functioning liver and kidney will give him the energy and strength he needs to progress and grow. There is so much hope on the other side of an organ transplant!
We always knew Kai would need a kidney when he was old enough for the surgery, but the cysts that destroyed his kidneys at birth were recently discovered throughout his liver, as well, and they have been causing recurrent infections for him for months now. The gift of life through organ donation is an amazing, miraculous program that will give Kai the chance to grow and develop into the man he was born to become! Our plan was always to have this transplant operation in our home state of Arizona, but due to the dual-organ nature of the transplant now, we will have to move our family to Stanford Children’s Hospital in California for three months when the call comes for his transplant.
Our family has partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. Please consider donating to COTA in honor of Kai.
We are grateful for the encouragement and support we’ve received from strangers as well as friends and families. This has been such a life-changing, isolating, impossibly difficult workload to take on. But as hard as it’s been to see Kai suffer through dialysis as an infant, we know it has blessed him with the time needed to prepare him for this life-saving organ transplant. Thank you for following Kai’s story and including him in your prayers. We love this little boy more than words can describe and it means the world to us to know he’s got an army of loving friends and family behind him, rooting for him all the way.
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.