May 27, 2015 Latest post:
Jul 30, 2022
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most. Eli was born with a very rare liver condition that has been labeled "idiopathic neonatal hepatitis". That condition can sometimes resolve on its own, but can also progress into chronic liver disease and Eli's has progressed quite rapidly. Eli's case has also not fallen into line with any previous statistics and has been a very challenging case to work with. His liver is completely cirrhotic and his portal hypertension is very high. He also has esophageal varices and most likely they continue on through his gastric system and he has been having some minor bleeding from those. In November of 2015 his bili levels took a drastic drop and his labs have been looking quite well ever since then. His tummy has been SO swollen, but have been able to keep fluid under control with diuretics, and we have been able to ease some of his belly discomfort by taking him to a chiropractor who specializes in a technique to help colicky babies feel better. A CT scan in early February of 2016 showed that Eli had an abnormal tissue mass, roughly the size of an orange, in his upper abdominal cavity....the radiologists were saying they were pretty positive that Eli had cancer. He underwent an open biopsy of the mass and a few days later we received the good news that it was not cancer!! Ya! Eli is officially on the transplant list as of April 1, 2016...so we began the journey...It's been a roller coaster ride, but we are hanging on and holding tight to the Hand of the Man...