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 …
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