The World's Worst Rollercoaster

    As if the winter months in NEPA weren’t dark and dreary enough, we continued to receive bad news about Connor’s reaction to the new medication. After onboarding doses via infusion of the new medicine, the plan was to schedule them once a month. That lasted exactly one month before we got the call that Connor’s body wasn’t absorbing enough of the new medication, and that we needed to bring him back to CHOP for infusions every other week. The days in between these infusions were a literal rollercoaster. Days 1 and 2 post infusion, he seemed happy and somewhat healthy, but that quickly went downhill – increased frequency with blood, no appetite, no energy – I was a constant ball of nerves.

    On March 14^th Jason and I took Connor back to CHOP for his next infusion. At this point, the poor kid was stooling 10-15x a day with loose, bloody stool. His coloring was terrible. He was refusing to eat and drink.  On top of everything else, he was getting over a viral infection – he catches everything thanks to being immunocompromised. We had been down this road before, so Jason and I packed a bag to take with us just in case. Before every infusion, the nurse draws labs to get a baseline on Connor. This particular nurse was concerned with Connor’s appearance from the start. When his labs came back, she immediately got in touch with one of Connor’s doctors. Dr. C called my cell phone while we were in the GI suite. He said they were going to proceed with the infusion and hang an extra bag of fluids. If Connor looked better and we felt comfortable, they were going to let us go home. We had to go back to CHOP two days later for an appointment with the nutritionist, so Dr. C said he’d stop in at the clinic to check on Connor while we were there.

    Two days later, me and Con Con took another road trip to “the glow in the dark hospital” (as he likes to call CHOP). Jason was having a crazy month at work, and it was just a quick visit with the nutritionist so I told him to go to work and not worry about it. What could go wrong, right?! You’d think by now we would know that Connor was put on this earth to keep us on our toes!

     Half way through the appointment with the nutritionist, Dr. C came in to talk with us. After a few minutes, he brought us to an exam room where Dr. K met us. Together they explained their concerns with Connor’s current condition and said they wanted to admit him. Connor and I hung around the hospital for another two hours before we were told that a bed would not be available until the next day. We could’ve stayed in the emergency department, but both of Connor’s doctors said he would be ok if I took him home to pack, get Jason, and head back down the next day; so that’s what we did. What came next was the scariest most stressful two week of my life.

     On Friday, Jason, Connor, and I made the two-hour trip back down to CHOP to be admitted. We didn’t know how long we’d be there, but we knew something needed to change, and quickly, because there was something really off with our sweet baby boy. The plan was to get Connor settled and hang some fluids Friday and Saturday, do a colonoscopy prep on Sunday, and have an endoscopy and colonoscopy on Monday to see what was going on in his little belly. Friday, Saturday, and Sunday went by without much excitement, but with a lot of nerves and anticipation about what the scopes might show. On Monday I had a nervous feeling I just couldn’t shake. We were told Connor’s scopes would be done in the OR, which was out of the norm. Typically, they happened in the GI suite. The procedure itself was quick, but it felt like forever. All around us, doctors were coming into the waiting room sharing an update on other patients while I stared at the board and waited until Connor’s procedure showed that it was completed. I jumped every time I saw another doctor walk through the door. None of them were Connor’s though. Instead, the receptionist called our name took us to the “little room” down the hall to wait for the doctor. This solidified the feeling for me, that we were about to get some bad news.

    Dr. G, an attending in the GI department, was the doctor who performed Connor’s scopes. We had him on rounds when Connor was in-patient last fall, so we were familiar with him. He shared (as gently as he could) that Connor’s colon was showing severe damage. His exact words were something along the lines of “the stages of disease run from mild to moderate to severe, and then there’s Connor”. At that point, in the confines of the tiny little room down the hall, I could no longer control my feelings.

     Connor was brought back to his room after recovery around 5 o’clock. Jason and I didn’t even have time to process what we had just learned from the scopes when we were met by two Endocrinologists and a Physician’s Assistant who told us that, because of Connor’s long- term use of high dose steroids, he is at risk for adrenal failure, and we needed to take a Stress Dose Steroid class prior to leaving the hospital so that we could learn the signs to look for and how to treat him. As if all of that wasn’t enough to go through, Jason had to leave to get back home to our other three kids and the demands of being a General Manager of a Manufacturing Engineering Company.

     As the days in the hospital went on, Connor’s labs continued to get worse. His team of specialists worked tirelessly to come up with the best plan of attack to stop his inflammation and begin giving his colon time to heal. Two weeks, three iron infusions, a new UC medication, some additional meds to stop infection, and a whole lot of gray hair later, our sweet baby boy was on the road to remission again.

     As I type this blog, we are two weeks post discharge, weaning the steroid followed by other medication. My anxiety is at an all-time high. I’m so happy to be home and back into a routine with our other kids (and our fur babies), but also so nervous about what is going to happen next. I’m cautiously optimistic about this new medication, but not naïve to the fact that everything could come crashing back down in an instant. I try to consciously find the good or a bright spot in every day, but sometimes that’s easier said than done.

    Today, the day before CHOP’s Walk for Hope, was a good day filled with family fun. Tomorrow we get to celebrate all of the little IBD fighters like Connor, both near and far, with some of the greatest doctors/nurses/staff in the world. Tonight, I’m holding onto hope that this latest medication might be Connor’s ticket to long term remission, despite what I just saw when he went to the bathroom; because without hope, what do we have? Tonight, I’m holding onto the good moments, praying that we find our way to solid ground sooner rather than later, because watching our sweet baby fight his never-ending uphill battle is hands down the hardest thing we’ve ever had to do.