The first 2 years of Pacey’s life were very normal. Little did we know that everything would change when he turned 3. At his yearly checkup the doctor found a mass in his abdomen, which turned out to be a very large stool blockage. We were working on potty training and as a mother of four this came as a huge shock. Yes, he had bouts of constipation like many kids do, but this needed to be dealt with quickly.
Pacey was put on a very strong laxative regime but no matter what we did, the issue progressed to the point of his body longer able to pass stool. After six months of laxative trials we resorted to daily enemas. Eventually those failed as well and he needed saline irrigation once or twice a day for a year. He learned to tolerate them, but over time even these were not as effective as they needed to be. After months of research we reached out to Nationwide Children’s Hospital. We live in Canada so he suggested we travel to Toronto to get further testing done. This testing determined that a cecostomy would be the best next step for Pacey. The cecostomy failed and Pacey’s flushes were all retained so we were back to rectal irrigation.
At this point we got referred to Nationwide for motility testing. Dr. DiLorenzo determined that on top of Pacey’s colon being horribly slow, he also had complete dysmotility. The GI center built a plan for us and our local surgeon to follow. This alone was such a relief! Our son ended up with an ileostomy as we were out of options. The Ileostomy came with even more complications resulting in six more surgeries. Our local medical team felt it was time to refer us back to Nationwide Children’s to see the CCPR team.
We flew down to Ohio again, and Dr. Wood performed another surgery which has been successful so far! Our son’s journey is far from over, but knowing that we have the experts at CCPR and the GI Center helping us, takes a huge load off our shoulders. They have been so good to us, and it makes the long travel days to get there so worth it! The Ronald McDonald House has been an excellent resource for us as well. Another thing we appreciate is their willingness to work with our son’s medical team back in Canada. This is so important to us because we can’t travel for every complication that comes up. Communication is something that they stress is so important and we feel like we have one huge team even though we are thousands of miles away. We are so thankful that we made the choice to be a part of Nationwide! Despite all the hardships Pacey has had to endure, he doesn’t let it hold him back..he loves to swim, bike, and play “surgeon”!