Jaydon Sebastian Medina was born on October 5, 2012, at 3:15pm. God had blessed us with such a beautiful baby boy. Jaydon looked healthy, ate like he should and would sleep like any other baby. He did have a little bit of jaundice on day two but that is not an unusual problem for babies and under the bili lights for 12 hours it had gone down.

Jaydon seemed healthy and perfect, but the jaundice reappeared a little before he reached two months old. Little did we know, Jaydon was already fighting a life threatening liver disease since the day he was born. We were immediately sent to Texas Childrens Hospital on December 7, 2012. I remember going from the ER, to the ultrasound room, to the Xray room, to getting labs after labs. This was just the begining for what our little guy will have to battle for the rest of his life. On December 8, 2012, blood work revealed that Jaydon’s jaundice was a more dangerous kind of jaundice than the normal “baby” would have and was diagnosed with Biliary Atresia. There is no cure for Biliary Atresia and the cause in why he has it is unknown. Doctors recommended a Kasai procedure surgery to try to get the bile to flow from his liver to his stomach using a piece of his own intestine. With biliary atresia the bile ducts in the liver and biliary system become covered with scar tissue and cannot drain the bile. The procedure is 80% successful when completed by two months of age. Without the help of the Kasai surgery or a liver transplant, the estimated life span for a baby is less than two years.

On December 11, 2012, we handed our little baby boy, who weighed 11 pounds and 5 oz, to the surgery team to complete an 8 hour surgery. It was the most agonizing day as a parent. We prayed, we cried, and just sat in the waiting room hoping our baby would be ok. All you can do is watch that little computer screen with your special code to change colors. At about 3 pm that afternoon our prayers were answered and Jaydon was out of surgery. Him being so tiny and enduring such a major surgery was just heartbreaking to us but we were ecstatic to be by his side once again. I didn’t get to hold Jaydon again until December 13, 2012. Two whole days passed by before I could hold my baby again. After being monitored closely by the nurses and doctors at Texas Childrens Hospital, Jaydon was showing positive results of improving. We were happy to hear that we could bring our baby boy back to our home December 19, 2012. We were told over and over by the doctors at Texas Childrens that the Kasai would only be a “temporary” fix and at some point if the Kasai failed, Jaydon would most likely need a liver transplant. Some Kasai procedures work for years; some only for months. Since the surgery, Jaydon had improved so well and his jaundiced has gone down tremendeously.

On October 4, 2013, one day before his first birthday, Jaydon became very ill with an on-and-off high fever. On October 6, 2013, he was hospitalized for that fever and after MRI scans and Xrays and Ultrasounds it was determined that he had encountered his first episode of cholangitis. Cholangitis is an infection of the bile ducts that is treated with bacteria-fighting medications for about a week. We were assigned a Home Health Nurse, and Jaydon went home with a PICC Line. Try keeping a kid that small from messing with something poking out of his arm that shoots near the heart. We lasted 11 days out of 22 days with a PICC Line because Jaydon developed a reaction to the Zosyn medicine that was being given thru the PICC line. We were admitted in the hospital for another 10 days. We were used to it by now, Texas Children’s had became our second home and the hallways had become our outdoors. After our discharge, we were advised IF Jaydon had another episode of Cholangitis we would be sitting down talking transplant. We hung on to hope and prayed he wouldn’t have another episode and he didn’t for the next four years.

On December 10, 2017, Jaydon wasn’t feeling well. His appetite was low and his fever was high. He’s 5 now, so we aren’t guessing as to what hurts because he can tell us himself what is aching inside. We rushed him to Texas Children’s for the first time in 4 years. I cannot begin to explain the feeling you get in your stomach as your driving to the ER knowing we aren’t coming home tomorrow. They admitted us right away and were going to treat him for Cholangitis but they werent quite sure why he was getting fevers if all other labs showed otherwise. So they were not 100% sure that Jaydon had cholangitis. Once we got settled to the room on the 11th floor, Jaydon started throwing up blood, an insane amount of blood. We were immediately rushed down to ICU. So many coats and scrubs surrounded the bed, with me and Jason just standing in a corner crying. There is nothing scarier than seeing your 5 year old child throw up that much blood and no one knowing exactly why. After numerous amounts of blood work, and an ultrasound it was determined that Jaydon had developed Portal-Hypertenstion.

Portal hypertension is common with children that have Biliary Atresia. Portal hypertension is an increase in the blood pressure within a system of veins called the portal venous system. Veins coming from the stomach, intestine, spleen, and pancreas merge into the portal vein, which then branches into smaller vessels and travels through the liver. Given the fact that the vessels in his liver are blocked due to liver damage, blood cannot flow properly through the liver. As a result, high pressure in the portal system develops. This increased pressure in the portal vein leads to the development of large, swollen veins (varices) within the esophagus, stomach, rectum, or umbilical area (belly button). The varices can rupture and bleed, resulting in complications. Jaydon will have several endoscopy follow ups and if needed some more bandings to control his portal hypertension and will take several medications alone to keep him thriving. If banding is needed we will be having to stay at Texas Children’s Hospital for recovery.

On December 14, 2017, we started the evaluation process to be added to the Transplant List. We met with the transplant team, that consist of our Liver Specialist, Transplant Surgeon, Dietician, Liver Coordinator, Social worker, Pharmacist, and Financial Coordinator.

On January 9, 2018, we got confirmation that he got added with a PELD score.

Our family greatly appreciates any and all support ???????????? God Bless

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.