Lexie’s Story
Within 6 months nearly all of Lexie’s organs had fully recovered and an MRI showed no signs of serious or even moderate brain damage. The only explanation Lexie’s doctors could offer to explain this recovery was “divine intervention.” Lexie’s primary health issues at this time were severe reflux, failure to thrive, developmental delays, and kidney failure.
Shortly before her first birthday we learned that Lexie would have to go back on kidney dialysis permanently until she was old enough to receive a kidney transplant. She had surgery to place a peritoneal dialysis catheter in her abdomen and we began dialysis shortly after her first birthday. Lexie was on dialysis 10 hours a night for 7 days a week at home. She remained on dialysis until we could get her weight up to 26 pounds, at which point she would be eligible for a kidney transplant.
When Lexie was two years old and finally approaching 26 pounds we began researching transplant centers and began testing for a living donor transplant. My husband and mother both wanted to give Lexie a kidney. I was not a match. We settled on the Children’s Hospital of Philadelphia, which was three and a half hours from our home, because they were only one of four hospitals in the country participating in an experimental pilot project where children would receive kidney transplants under a steroid (prednisone) free protocol. The pilot project also offered an opportunity to discontinue an immunosuppressant drug called Prograf after six months. Prograf is known to destroy kidney tissue (nephrotoxicity), so it can shorten the life expectancy of a kidney transplant. Campath, another experimental immunosuppressant drug, was being used under this project in place of Thymoglobulin, which was historically used to destroy the patient’s immune system shortly before and after the transplant surgery.
My husband was approved as a kidney donor and on May 2nd, 2007 he and Lexie went into surgery. My husband was in surgery for about two hours before I had to take Lexie back to the operating room for anesthesia. Kidney transplant surgeries typically take no longer than 5 hours. Five hours came and went. My husband was in recovery but heavily sedated. We were getting very little information from the surgical team. Six hours passed and I knew something was very wrong. After Lexie had been in surgery for over 9 hours, the surgical team finally came out to deliver the news that they could not give Lexie my husband’s kidney. The renal artery on my husband’s kidney had torn in three places when they removed it and they could not repair the kidney. It finally clotted on the table and was no longer viable. The surgical team had to sew Lexie back up without a kidney. While Lexie was being sewn back together, I had to go and deliver the news to my husband. It was one of the worst days of my life and the only time I ever saw my husband cry.
