With Alagille syndrome, sick days can be concerning

My two young boys are in full-time day care or school, so we’re no strangers to illness in our household. Between the sniffles, the coughs, and the green boogers, I am well seasoned in the germs they bring home. But when it comes to my youngest son, Finley, who was born with Alagille syndrome, sick days bring up some difficult feelings for me.

Sometimes I sit down to write these columns and have to think hard to find a topic. Other times, a topic falls directly into my lap. Today was one of the latter days.

Finley woke up this morning and felt a bit warm, but his temperature was normal. He seemed tired, but acted well enough that I took him to day care. About 90 minutes later, my phone rang, and the teacher let me know that Finley was acting lethargic and had a high fever. Immediately I jumped in the car and raced off to pick him up.

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On my drive there, my mind ran through all of the possibilities — thoughts I never have about Finley’s older brother, Jackson, who’s in first grade. I’ve received a handful of similar calls about Jackson over the years, and while I’ve had to pick him up on occasion, these moments aren’t accompanied by the same worries I have regarding Finley’s rare disease.

Finley lies low on a sick day. (Photo by Jay Sandstrom)

Upon hearing that Finley had a high fever and wasn’t acting like himself, my mind started racing and preparing for the next steps. Would we need to take a trip to the emergency room later? Would I need to contact our gastroenterologist? Was it just a cold or the flu, or was something wrong with his liver?

All of these questions were spinning around my head before I even laid eyes on him.

When I arrived to pick him up, the class was playing a dancing game in one part of the room, and Finley was lying on the small calming couch with his nap-time blanket. This was way different from his normal behavior, and I could see his condition had worsened since I dropped him off. I carried him out to the car and we headed home for some rest and relaxation.

The car ride home was silent, which is rare with Finley. He normally makes all kinds of crazy noises while playing with his toys, sings one of his favorite songs, or talks my ear off. Today, he was quiet. I could see his eyes were watery and a bit red. His skin, which thankfully has been pretty darn clear over the last few months, was showing his jaundice more than usual. He was in a rough spot.

At home, he immediately planted himself on the couch with a big, fuzzy blanket. I took his temperature, and while it was high, it wasn’t anywhere near the 104 F reading the day care staff had reported. My heart settled a bit — but not for long.

Finley, front, and his brother, Jackson, show how much energy they have when they’re not sick. (Photo by Jay Sandstrom)

My anxiety ramped right back up when Finley pointed to the area where his liver is and said, “It hurts right here. I want new pants.” My heart started to race. Was something really serious going on? The ER visions rushed back into focus. But after a few more questions, I realized he just meant that the waistband on his pants was uncomfortable and he wanted to take them off. I breathed another sigh of relief. I helped him change and got him as comfortable as possible.

The poor little guy barely left the couch for the majority of the day. But by the time Jackson got home from school, Finley was in better spirits.

It ended up being a warm day where we live, so we busted out the splash pad on the back deck. Finley mustered up the energy to go outside, and while he didn’t play as hard as he normally would, he still got in the water and had a good time.

The majority of my anxious thoughts have dissipated by now. While I can see that Finley is sick, it’s nothing that needs immediate medical attention.

It’s hard to know that my anxiety about Finley’s condition will be a constant in my life, regardless of how sick or well he is. His health status can change in an instant. I just have to remain positive, stay vigilant, and make sure he is well taken care of, whether that means a trip to the doctor or a calm afternoon on the couch.

Note: Liver Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.

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