Devin came into our lives one morning in December 2004. He was 13 months old and in the pediatric intensive care unit at the Children's Hospital of New Jersey. Devin was very cute and interactive but was alone. There was no family at his bedside. What's worse is that Devin had lived in the hospital since birth due to a condition known as short gut syndrome--parts of his small bowel are missing which results in poor digestion and a lot of diarrhea. He was a ward of the state due to his mother's battle with drug addiction. We immediately fell in love with him and decided that this cute baby should not spend Christmas in the hospital.
The more familiar we became with Devin's situation, the more we thought that we could make a difference in the life of this baby. Devin is medically fragile, but he is so full of life. He deserved better than living in the hospital. He deserved a home, a family, he deserved to play outside with other children in the sun and the snow. Most of all he deserved to be loved. He deserved to be held and kissed and rocked to sleep.
Because Devin requires special nutrition that is administered through a central venous catheter (a device that sits in one of the major veins that enters the heart), his care can only be entrusted to a caregiver with specialized training in caring for this catheter. This is at least part of the reason that finding a home for Devin would prove challenging for the state agency in charge of his care, DYFS. But our home is especially equipped to care for Devin. Though we had no special supplies at the time, my wife and I are pediatric intensive care nurse and physician and thus, trained in caring for the central venous catheter. And most importantly, we wanted to bring quality to Devin's life.
So my wife set out to accomplish this Herculean task. Getting the state agency to allow Devin to come home for Christmas was the first challenge. Though we agreed this was a great idea and this was the true meaning of Christmas, we found that getting the state agency to act in such a brief window of time was a nearly impossible mission! Through endless determination and countless hours, we finally got to bring him home. It had to be somewhat shocking to a child who only lived in the hospital until this point. His first car ride, his first time being outside, getting dressed, putting on clothes, shoes, a winter jacket--the things we don't even think about. Devin loved the attention. Upon arriving home, Devin was welcomed by our kids and family as though he was our biological child coming home from the hospital for the first time. Balloons decorated the front porch and all arms were waiting to get their hands on him. It was amazing how we all came together to give this little boy a special Christmas.
Before we knew it, it was time to bring Devin back to the hospital and we were all devastated. Devin had a real Christmas. He was hugged, kissed, and loved. He played outside. He got tons of presents. The reality was, though we did a good thing, Devin belonged to the state of New Jersey and had to be taken back to the hospital.
We continued to visit Devin everyday as we fought to bring him home for good. We started to advocate for his care, being that he needed someone to oversee his daily medical needs. This was no easy task. We had no rights but knew what was in his best interest. Several surgeries and several months later, we were able to bring Devin home for good. Now, Devin was really living life. He was approaching terrible two and was demanding and full of life. As we all adjusted to a toddler in the house, it was interesting. Me and my wife getting up every two to three hours to change diapers, because of his intestinal issues. Going to the mall or dinner had been easy until then (the other kids were 8 and 11 years). These trips became a little more complex with Devin who was being fed through a feeding tube at times 18-20 hours per day. Also, any night time activities had to include planning to infuse into Devin his intravenous nutrition--a procedure that requires sterility and the addition of medicines to the iv nutrition before attaching it to his lifeline--the central venous catheter. These things became particularly challenging when transitioning Devin to GI or iv nutrition occurred while we were out and Devin was more rambunctious than usual. The simple solution would have been not to do those things as a family or leave Devin at home during those times. That would, however, have defeated our most important purpose which was to bring quality to Devin's life. Everyone adjusted over time and we became experts on how to get around with a child who has medical needs.
Over time we searched for the world's expert on caring for children with short gut syndrome. As health care professionals, we understoood that Devin's medical fragility could one day lead to his demise. Because his central venous catheter stays in a major vein (leading into his heart), Devin is prone to catheter related infections. These infections can be deadly. Devin had more than 12 such infections in 2006 . My wife and I knew that we were walking a tight rope with Devin. Our surgeon in New Jersey, who has been intricately involved in Devin's care, performed a bowel lengthening surgery (the second one for Devin) in an attempt to improve Devin's feeding tolerance and decrease the bowel inflammation that can cause these bloodstream infections.
In September 2006, we found what we had been searching for--a wonderful pediatric gastroenterologist in New Jersey, who truly is the reason Devin is still going strong. Her dedication, attention to detail, and seemingly limitless time and energy have been a source of encouragement for us.
A pediatric gastroenterologist in Boston who specializes in bowel rehabilitation told us that Devin needed a bowel transplant. At the time however, Devin was tolerating more and more feeds through his GI tract and needing less and less of the iv nutrition. In our minds, bowel transplant (with it's great risks) was out of the question.
In June 2007, Devin's bowel stopped working altogether. He was, for reasons that we still don't understand, no longer able to tolerate even fractions of the nutrition via his GI tract. He was on full iv nutrition, which we know will eventually cause his liver to fail. Trying to manage his care during this time was becoming more difficult. He had chronic belly pain, watery stool, and was vomiting and gagging with everything he ate or smelled. After exhausting all medical therapies, we opted for one more try at surgery, knowing this was our final attempt to make things work. Surgery was slightly successful. His belly pain was gone, he was able to tolerate some feeds, and he was no longer vomiting all the time. Not long after surgery, however our hopes were gradually fading with time as he became increasingly intolerant of his feeds until finally we were back in the same place as prior to surgery. It was then that we realized that a bowel transplant was our only shot at keeping Devin going. Our gastroenterologist told us that she had nothing left to offer us and that we should really explore the option of transplant before ruling it out. As it was our only hope, we decided to explore the transplant option.
In March 2008 we headed down to Georgetown to see a transplant team that came highly recommended to us. After three days of testing and ten days of waiting for results, we were told Devin's only chance is a bowel transplant. This did not seem real to us. After all our hard work, we believed we were going to beat the odds. This became reality on April 20 at 7:00pm when we received a call that there was a potential donor whose bowel was a perfect match for Devin. Unfortunately, 6 hours later the offer was rescinded. This was a wake up call for us and brought our level of realization to a new level. Although we will never fully be prepared, we are better organized.
Today, we wait for the next call. Hopefully, this will be the call that will save Devin's life. In the meanwhile, Devin lives--playing t-ball, swimming, riding his bike and scooter, jumping on his sister's bed, playing Playstation with his brother, talking on the phone and listening to music. . He truly loves life. Please keep us and Devin in your prayers. It has been an amazing journey......