Trey (Nebraska)

Trey was born December 12, 2005. He weighted 9.8 and appeared healthy. After a few days he turned yellow but that was nothing new to us. Both of Trey’s sisters, Emma 10 and Anna 8, were yellow and had the lights in the hospital. All of them went home after 4 days in the hospital and used the wallaby blanket for a week. The home health nurse was the 1st to question Trey’s direct bilirubin saying she had never seen one that high. Trey’s wonderful doctor was watching and sent him on to Children’s Hospital in Omaha. He had tests on January 23rd and 24th and after being diagnosed with Biliary Atresia he had the Kasai procedure on the 27th. Eight days later the Kasai was ruled unsuccessful and we scheduled Trey’s 1st appt with UNMC from his hospital room at Children’s. We first met with UNMC on Feb 16 and they told us he would need a transplant within a year. On April 6th Trey was placed on the transplant waiting list. He continued having visits to UNMC and on April 23 they contacted us asking if there might be someone interested in being tested to be a living donor. Four days later UNMC called asking us to please tell our family and friends they have enough applications for now. They were getting many phone calls and it was taking to much of their time. I have the hardest time saying that without getting tears. Every visit to UNMC they threatened a feeding tube and Trey always gained enough weight to escape it. (although a lot of his weight was fluid) Our friends, family and community members came together to hold fund raisers and pray. On June 12 UNMC called saying Trey’s aunt Christa was a match for Trey and on the 28 they let us know the transplant was scheduled for July 6. On July 5 we arrived in Omaha for all day testing and that evening at 10:50 we received a phone call that the transplant had to be bumped. Three adult cadaveric donors became available. On July 7th Christa reported for surgery at 6am and Trey at 8am and at 3:15 the surgeon told us the transplant was successful. Trey spent 3 weeks in the PICU and on July 26 he was released for home. Trey went home weighing 13.6 lbs, just shy of 4 lbs over his birth weight. He went home on several meds and started with every other day labs and the days between increased as time went on. In 2007 Trey had several hospital stays including a 14 day admit and a 11 day admit in Omaha. He spent one night at Bryan Hospital and the next morning he took a helicopter ride to UNMC because of his 106 fever and elevated blood counts. The years after brought more hospital stays, tonsils removed, tubes placed in ears, positive for gram negative rods, gram positive rods, incarcerated hernia, lymph node removed, tests for cancer and more. In 2010 we celebrated a year with no hospital stays. Trey did have several ER trips, doctor visit and a lot of tests. At the end of June he was diagnosed with a blood clot in his portal vein. He does have several large varices in his esophagus and rectosigmoid along with gastropathy in his stomach. We will wait for a bleed and the doctors will make a decision at the time what to do next. Most likely another transplant will be in Trey’s future. We don’t know when that will be. Everything will depend on his body. For now we monitor with labs and try to live day by day and enjoy every minute God has given us with him. Trey is truly a blessing to us. He is in his 2nd year of preschool and is all boy, loves to swim, camp, sports, Nintendo DS, superheroes and playing with his sisters. He also has a gentle caring side and likes to laugh a lot. You can follow his journey on Facebook at Trey’s transplant or


No comments yet