Baby Myles' Liver Transplant Fund
Sweet baby Myles arrived on June 23, 2016. We were so excited to complete our family with our second son, and a new baby brother for our then 14 month old son Jace. Never did we dream they would be faced with the tragic news on Monday August 8, 2016 that Myles needed to be immediately addmited to Sunrise Childrens Hospital for testing. Never could we have imagined the trials we were about to face. The next couple weeks were spent at sunrise hospital getting a ton of test to try and diagnose Myles condition, including a liver biopsy. But with no success Myles would have to be flown to UCLA for an exploratory surgery called an intraoperative cholangiogram, and the main suspect was something called, Biliary Atresia, a rare, life-long and life-threatening childhood liver disease that affects 1 in 16,000-20,000 infants shortly after birth. There is no known cause and no cure. This disease is not hereditary. In order for infants to survive they must undergo a major life-saving operation called the Kasai Procedure shortly after diagnosis, this operation is used to hopefully avoid a Liver Transplant, but in the majority of cases the Kasai Procedure fails. Therefore Biliary Atresia is the leading cause of liver transplantation in children as the majority of those diagnosed with BA end up needing a liver transplant. A liver transplant is not a cure, it too brings its own life-long problems. Those diagnosed with this disease will be in and out of hospitals all their lives having operations, procedures, tests and scans to monitor their disease and ultimately keep them alive. The exploratory surgery went well and Myles had his Kasai procedure done on August 22nd 2016. The surgery and recovery went well but sadly Myles Kasai procedure already failed.
Since then Myles has been in and out of the hospital with fevers, infections, cholangitis, and his most recent procedure, a broviac catheter, which is a long term central line (IV in his chest) for IV nutrition to help him gain weight. This process of feeding him bypasses the Biliary system and goes straight into his veins so he is absorbing every calorie he is receiving. Therefore he will gain weight very quickly. The downside is that it is very hard on the liver. He also has a NG feeding tube through his nose into his stomach to feed him 20 oz of formula each day as well if he will not eat it by mouth. Myles is currently listed on the pediatric transplant waiting list at UCLA Hospital with a P.E.L.D score of 19 and is eligible to start receiving offers for a new liver. He is getting more sick everyday and when the time comes for him to get his transplant I will be going on medical leave at my job without pay and going with Myles to UCLA to stay in the hospital for the approximate month he will need to be admitted for recovery. After he is well enough for discharge Myles and I will need to live locally ( most likely in the Ronald McDonald house if there is space available) for 3 months for weekly checkups and to make sure his body doesn't reject his liver. Although this has been the hardest endeavor our lives, we have such an amazing support group and Incredible family and friends who help us daily and generous people who have helped us stay afloat and pay our bills since Myles first began his journey with BA. Please continue to pray and share this for us we will need all the love,support, and hope we can get it has only just begun, but my sweet boy "Smyles" is a fighter and we will never give up on him. Thank you all again for all the love and support.
