"Our baby got his second chance at life!"
February 27, 2017 • Author: Traci Peck
David was diagnosed with reflux after turning a year old – he was tested due to periods of vomiting. He’d also had a few episodes of dehydration that were treated at our local ER. One afternoon in June of 2003 (he was 2yrs old), he woke up from a nap vomiting, lethargic and pale. I took him to our local ER where he was again treated for dehydration, but this time would be admitted to a unit after spending several hours in the ER. Not long after we got up on the unit our pediatrician came in and said he needed to be transferred to either Riley or St. Vincent Children’s Hospital for higher level of care. His heart rate was 202 and his blood sugar was over 300. In the ambulance during transport, his heart rate was 212. When we arrived to St. Vincent Children’s Hospital, we were met by an entire team of doctors and nurses, starting IV lines in many places. He was taken to the OR where they found that all of his small bowel was twisted, full of gangrene and dead. This was just 12 hours from him waking up from his nap. The surgeon, Dr. Josh Caresky, came to tell us this news and that there was nothing they could do, that David may only live another 48 hours. I asked if he could receive a transplant, I can only say that God must have told me to ask that question because I remember being very calm when I asked. He said he would see what he could find out, and we went to share the news with our family who were gathered in a waiting room.
Once David was settled in the ICU, we were allowed to be with him. We met again with Dr. Caresky who informed us that David would be a good candidate for transplant due to his good health and his weight. In the very late hours of the night, I was told that Dr. Joe Tector was at the hospital and wanted to meet with us. Dr. Tector told us how the intestinal transplant program at Riley had just been approved two weeks before and while he would do everything in his power to get us to whatever transplant hospital we wanted to go to in the country, he would love to help our son. Staying here meant having the support of our family and friends, so we made the decision to have the transplant at Riley. With this decision made, David went back to the OR where they removed all of his small bowel and a third of his large bowel. A central line was placed and he would receive TPN (nutrition) that way, he had a drain tube from his stomach and wouldn’t be able to eat normally at this time. He was in the ICU for one week before going to a regular unit for another week.
The day he was discharged we met with Dr. Tector, Dr. Fridell and other members of the transplant team. When we asked what could have caused this to happen, Dr. Tector said David’s intestines never adhered to the abdominal wall, but it wasn’t caught during the testing he underwent before this all happened. His diagnosis was mid-gut volvulus or short gut syndrome. David went through many tests over the next four weeks in order to be approved for transplant. During this time, we learned that a donor would have to be of similar age and size. As you can imagine, this was difficult to take in. We met with our pastor and asked for guidance. I mean how do you pray for transplant knowing another family would lose their child? Our pastor told me that’s not what we are praying for, but pray for God’s will to be done. His transplant coordinator at that time called me on a Friday afternoon in July - she said he’s been placed on the transplant list!! I had so many questions over the weekend that I called her on Monday morning, mainly wanting to know that if we get the call how long do we have to get to the hospital since we live almost an hour away. She said that she typically tells families to leave their house within 30 minutes of the call. Later that evening, in the usual dinner craziness, the transplant coordinator called and asked me if we could leave our house in 30 minutes. I couldn’t believe it!!!
When we got to Riley ER, we were placed in a room so David could be checked out and make sure he didn’t have any symptoms of infection. Then we waited for what seemed like forever with the boys playing in the atrium, running up and down the ramps around the water pools where they threw in coins. When it was finally time to take David to the OR, they allowed us all to walk him up to the main doors before entering a sterile area. David was very calm, had no problem being handed off to the RN. He snuggled right in on her shoulder holding his ni-night (any receiving blanket would do, but this was his Mickey Mouse one). I remember her last name was Applegate. We then went to the waiting room to wait, after about 7 hours, Dr. Tector came in and told us his surgery was a success!! Once David was in recovery we got to see him, it was truly miraculous!! Our baby got his second chance at life!!
After two days in the ICU at Riley he was transported over to the Organ Transplant Unit at University Hospital where we stayed for two months. For the first few weeks, he had one-on-one care by an RN and he had many, many scopes to check on his new bowel. With the bowel, you can’t just do lab work, you have to actually look at the alveoli to make sure they are long and fingerlike, if they are short and blunted that usually means rejection. David continued to improve and quickly got back to being an active toddler, we celebrated his third birthday while in the hospital. The nurses brought in balloons, pizza and cake for his big day! He was allowed to eat this food because they would know the cause of his increased output from his ostomy (ileostomy was placed for easier access for the scopes and to measure his output watching for rejection). Two signs of rejection are increased output and fever. While we were still inpatient, I was talking with Dr. Tector and he introduced me to Andy Ellenwood who was with IOPO (now Indiana Donor Network) at that time.
When they were finally able to get him off the TPN and he was eating food again, we were discharged home. Yay!! We had multiple appointments a month, including lab work and colonoscopies. This began to lessen over time as he continued to improve. David and I did whatever we could to help other families facing the same transplant. Since David’s was the first in the state of Indiana, I didn’t have another parent to talk to, so I made it a point to be available for other parents. I would talk to them at the hospital or over the phone whenever Dr. Tector called and asked me to. After about 9 months, he had surgery to take down the ostomy so he no longer had any appliances or lines. Even with these things he was still a very active 3 year old. If his ostomy bag needed replaced from all the running, he would just come to me and say “I ripped my bag,” and we’d put a new one on. Nothing slowed him down - no matter how much I wanted to wrap him up in bubble wrap and protect him - he was too busy chasing after his two older brothers to let me do that.
David and I then became advocates - speaking at whatever event they asked us to share his story to promote donation. We also met Brenda at one of our first events. We were interviewed many times for TV, newspapers, IU Health publications, IOPO publications - David was even in a commercial!
He took a lot of medication in the beginning, but now we are down to five plus a multivitamin that he takes every day. They keep his immunosuppression level where he’s suppressed enough to keep his organ, but not so suppressed that he can’t fight off the common cold. Now, 13 years later, he still has labs drawn once a month and a colonoscopy done annually. He’s been allowed to be a normal child in so many ways, playing sports we’d never thought he’d play. He’s a healthy and happy teenager!