After scans and exams, it was determined that he had inflammation in his GI tract and to follow up with our PCP.
In the following days, he started to seem worse; he had no energy, no appetite, and spent too much time in the bathroom. When we went to the follow-up appointment on a Friday afternoon, the doctor came in and said he looked very sick. She immediately suggested we see a Gastroenterologist at UPMC Children’s. They scheduled him to come on Monday at 7:45 a.m., so we were in the car at 6:15 a.m. and on the road to Wexford. From there, an endoscopy and colonoscopy were scheduled for the next week. The outpatient procedure turned into four days at Children’s and a diagnosis of Crohn’s disease.
We had a lot of tears, fears, bloodwork, and learning ahead of us. Trips to Pittsburgh for the induction phase of Remicade infusions before being able to have the infusions done in our home. We were blessed to be assigned to a fantastic doctor who travels to UPMC Hamot; Dr. King is a blessing for which we will always be grateful.
Fast forward almost a year later, my now 15-year-old is in remission, BUT… my 17-year-old son is not feeling well and beginning to show GI problems. Here we go with another typical emergency room visit, “yes, it seems something is going on; follow up with your PCP.” We don’t make it to the visit to the PCP before returning to the emergency room again. This time scans showed inflammation; many labs were worse than they were four days prior. We were told that he needs to see a Gastroenterologist.
Where do we go? Is he an adult or pediatric patient at this point? “Follow up with your PCP.”
We visited the PCP on Wednesday and discussed where to go. “There are no pediatric GI’s in Erie.” With excitement, I said, “oh no, there is a wonderful GI that comes to Erie from UPMC Children’s, and he is going to start being here full time in July.” We sat at UPMC Hamot the following Monday morning to see Dr. King! He walked through the door, took one look at my son, and said that he thought the best plan of action was for me to take him to UPMC Children’s and have him admitted through the ER. This time I was prepared to stay for a bit. Dr. King suggested packing for a week just in case.
We make the 2-hour trek to Pittsburgh and go into the ER. Not long after, we were taken to the 8th floor, and they began an IV to administer medication and fluids. They scheduled him for an endoscopy and colonoscopy to happen Wednesday morning. He now had been losing blood for a week, but during the bowl prep, he had lost so much blood that his body required 2 units. He was so frail, so tired, and just plain weak.
Wednesday, we make our way to the operating area. I patiently wait and watch the board to monitor his progress. The doctor comes out to speak with me… 364 days later, the exact same room that I was in with my younger son, we were given the diagnosis of Crohn’s disease.
Again, we go through the induction phase of Remicade at Children’s, but after the next one, we hope to move his infusions to be done in our home, and our follow-up visits will happen with Dr. King here in Erie. The next round of colonoscopy and endoscopy will hopefully happen with Dr. King at UPMC Hamot.
We can’t tell you enough how excellent the team here in Erie has been and how truly fortunate we are to have the care here at home.