We thought this would be a great platform for updates on our sweet Banksy boy. As most of you all know the journey started with Banks being a fraternal twin. His twin brother, Wesley Theo, was born at 21 weeks, lived on this earth for a short 30 minutes and is now resting in eternal peace watching over his brother Banks from above. The doctors at Women's Hospital said there was a high likelihood that baby B would deliver within the next two weeks after Wesleys birth. Banks was born at 35 weeks and 3 days. So it’s safe to say he has already defied the odds from day one. He had a short stay in the NICU but went home with no complications. He was small from the beginning so he had to catch up with his growth.
A couple months went by and he was gaining weight, but pretty slowly. One day I noticed he looked more yellow/jaundiced so I decided to take him in to get his labs checked. His liver enzymes were elevated and bilirubin was way above what it should be, given his age. We did some tests at Children’s Hospital in Omaha and he was diagnosed with biliary atresia. This means that his gallbladder became fibrotic at some point after birth which caused bile to back up into his liver, causing inflammation. We ended up going into surgery and they performed a procedure called a ‘kasai’ on April 27th, to reconstruct his intestines to start a new pathway so that bile could drain and release the back up of bile. The kasai has a 50%-80% chance of not working and is basically a bridge to bide some time to a liver transplant. Surgery went well. Post surgery was rough on our hearts as we watched our sweet boy recover. There were many ups and downs of emotions. We stayed in the hospital for 9 days while he was recovering. We got discharged and quickly became overwhelmed with all of the medications that he would have to be on long term.
We eventually figured out a routine that worked for him but ran in to episodes of him vomiting after his medications. We had to get lab draws regularly to make sure his liver labs were showing us that the kasai worked. His liver labs looked great for a short time. But at his two month Iab draw, his liver enzymes were quite elevated and bilirubin sky rocketed again. We ended up getting admitted to be on antibiotics. Post-kasai, there is a high risk of cholangitis which is an infection related to where the intestines were surgically connected to the liver. So they thought that maybe this was a cholangitis episode. We got admitted to Children's for labs to rule out every virus or infection. During his hospital stay his labs worsened and Dr. Reyes decided it was best to get evaluated for a liver transplant. We were then sent to UNMC to start the liver transplant evaluation. His labs are still rising, and as of June 21st at 3:15pm Banks was put on the liver transplant list.
We have been humbled by those who have been willing to step forward to be evaluated for a liver donation for Banks. To sign up for evaluation to be a living donor, check out
https://www.nebraskamed.com/transplant/pediatric-liver-transplant/living-liver-donation. 
