Skip to main content

The Flare that Just Won't Quit

          July of 2022 brought with it a lot of summer fun. From family gatherings, to pool days, and visits from out of town friends, our weekends were jam packed, but it was all good things happening. One particular weekend in mid-July all four kids were having a sleepover at Grammie and Papa Randog’s house (Jason’s parents) because some of my friends from college were coming into town for an overnight visit. After a few hours, and in the middle of a game of corn-hole, my mother-in-law sent us a picture of a stool that Connor had taken at their house, and it was very concerning. She reassured us that he was acting normal and having fun so, I tried to put it out of my head and enjoy spending time with our friends, but I couldn’t shake the feeling that Connor was taking a turn for the worse.

          That following week my fears came true. Connor was not getting any better – if anything, he was getting worse by the day. I talked to his doctors at CHOP who had us get some labs done locally. They didn’t like what they saw on the results so they scheduled an appointment for him to be seen in person. At that appointment, it was determined that Connor needed additional therapy to help decrease his inflammation and was put on a triple antibiotic. His doctors also decided that they needed to schedule another endoscopy and colonoscopy to get a better look at what was happening inside his little belly.

          Fast forward two weeks and we were back in Philadelphia for Connor’s scopes. His doctors determined that there was active disease in his lower right intestine and we would need to explore other options for therapy/treatment because the oral medication that he was on was no longer working for him. We immediately began the process of obtaining prerequisite labs and preauthorization from the insurance company so that he could receive the new medication as soon as possible.

          A few days later Jason, Sadie, and I headed out of town to celebrate the wedding of one of my pseudo sisters in NYC. My mother-in-law was staying at the house with the boys. On the night of the rehearsal dinner, she called to let us know that Connor was running a low-grade fever and seemed tired, but overall ok. She gave him some medicine for the fever and he went to sleep. The next day she said he was acting normal. The day after the wedding, we returned home to a little boy who was not himself – low-grade fever was back, refusing to eat or drink, and becoming more lethargic as the day went on. I was getting more and more concerned. Jason and I decided that we needed to take Connor to the emergency room. We knew his issues were related to his UC, so we made the decision to drive to CHOP’s ER. We arrived at the new CHOP King of Prussia location at midnight. Connor was admitted for observation and fluids for dehydration. The next day they transferred us to CHOP main so that his GI doctor could treat him. This turned into a five-day hospital stay where Connor began receiving infusions to treat his UC (no thanks to the insurance company, but that’s a story for another blog post). With a new treatment plan in place, we headed home with a renewed hope that Connor was back on the road to remission.

          The remainder of the fall and early winter was filled with trips to Philadelphia for infusions and doctors appoints, along with lots and lots of labs. Our sweet baby boy couldn’t catch a break or relief. Christmas and the New Year came and went; and so did Connor’s energy, color, and appetite. The second Friday of January we went to Philly for Connor’s infusion. That following Monday, I took him back down for what I thought would be a routine clinic appoint. After reviewing Connor’s labs and examining him, his doctors determined that it was not safe to take him home, and he needed to be admitted to the hospital again. Another 5-day hospital stay, a new medication, a 5-week steroid ween, and still on the triple antibiotic we went home, truly believing that THIS was going to be the time that Connor found remission. Take one guess what happened next …


                

                   

 

 

 

 

 

 

 


Comments

Post a Comment

Popular posts from this blog

Speed of Light

  Don’t blink. A statement we hear often but don’t fully understand; at least for me, not until I had a quiet moment to sit back and reflect on the last nine months. That’s how long it’s been since I’ve taken the time to get all of my thoughts out here. In that time a lot has changed and a lot has stayed the same. Our kids are another year older – Sadie started her last year of Middle School and Cooper his last year of Elementary School. My Aunt Anne went to Heaven to be with my Uncle Pat, and my sweet Grandma wasn’t too far behind; undoubtedly happy to be back with my Grandpa, but let me tell you, losing some of the most important people in your life in such a short time span really sucks (sorry – there isn’t a nicer way to put it). After 17 years I left my job for a new opportunity that gives me more flexibility which has been great. A much appreciated added bonus – the company/people that I work with are some of the most supportive individuals you could be around. It comes w...
Post a Comment
Read more

Gratitude and Match Day

WARNING: Long-winded explanation of a short story. I am a firm believer that God puts people in our path for a reason. Over the course of the past couple of years, He has REALLY been stacking our path with people who have lifted us up and given us hope during our hardest times. One of our favorites (whom we’ve never actually met in person yet) is Adam. Before I get into why Adam is so special to us I’ll give you a little background. Almost 10 years ago my cousin Max started dating his now fiancé, Emma. She immediately fit into our family with her bubbly upbeat personality. A beacon of light, it’s no surprise that she attracts the same types of friends. One friend/college roommate in particular played a huge role in connecting us with Adam. The friend, better known as Quinn, is one of the most cheerful outgoing people around. On more than one occasion, Emma and Quinn were talking about our kids; more specifically Connor and his diagnosis/treatment at the time. Emma shared with Quin...
Post a Comment
Read more

Third Time’s a Charm .. or So They Say

Have you ever felt like the universe was testing your limits? That’s where I’m at and have been since the start of 2025. After the loss of a few loved ones and two hospital stays with Connor I thought maybe we’d been through enough for a little while. I of course never said that out loud though. We are all familiar with my constant fear of “the other shoe dropping”. So I’ve just been holding my breath and hoping for the best. Deep down a very large part of me knew that Connor’s symptoms post RSV weren’t getting better like we’d hoped, but ever the serial optimist, I held out hope. The air was slowly being let out of my optimistic bubble beginning Thursday of last week. Connor woke up crying, which he rarely does, saying he was in a lot of pain. That coupled with increased bleeding earned us a virtual appointment with his GI team. Because Connor was still hydrating at home and not showing signs of dehydration, the plan was to schedule an endoscopy/colonoscopy for this week and see what ...
Post a Comment
Read more