Everyday vigilance is part of raising a child with Alagille syndrome
A recent hospital visit reminded us that potential problems are always looming
I’m fortunate that my son Finley, who was born with Alagille syndrome, has had relatively good health since his diagnosis and subsequent treatment. The advice we’ve followed, mainly on medication and proper nutrition, has supported him as he’s grown.
On an average day, we give him his medicine in the morning and evening. Outside of seeing him scratch from time to time, we can easily fall into regular routines and forget that he has a rare genetic condition. But the other week, my family and I were handed a big reminder of the type of symptoms we need to keep an eye out for.
To set the stage, this incident happened the day after Washington state, where we live, was hit by a bomb cyclone. I’d never heard of that phenomenon, but it caused crazy high winds and left our region without power. Thankfully our house didn’t lose power, but with outages and damage from fallen trees, our kids’ school and day care were closed.
No problem, I thought. I’d left my computer at the office, but I could easily swing by, grab my laptop, and work from home for the day. Between me and my wife, Dani, we could piece together watching the kids while working. But right as I was tying up a few loose ends at the office before heading home for the bulk of the day, Dani texted me that Finley had a concerning bowel movement. Apologies in advance for the detail I may need to use to share this story.
Raising a child with liver disease, you know that you need to look out for abnormal-looking bowel movements. Typically your doctors tell you to look for pale, gray stools, as those require immediate attention. But this one had black lumps in it, something like pieces of coal. Immediately upon hearing that, I grabbed my stuff and headed home.
While I was driving home, Dani was getting in touch with our gastroenterologist’s office. Based on what we saw, the doctor wanted to get labs done to figure out what was going on. We were given the option to get labs and wait for results, or go to the emergency room at our children’s hospital to expedite tests and see our doctor. We chose to visit the emergency room, and since school was closed, it was a family affair with me, Dani, Finley, and our oldest son, Jackson, packing up to head to the hospital.
That wasn’t the way I’d envisioned the day. Sure, I thought it might be a bit difficult to work from home with the two boys, but I’ve managed that before. It’s doable. Adding a hospital visit made the day tougher, but while raising a child with a rare disease, I’ve often been reminded that I’m never truly in control of the situation.
Our hospital visit
We arrived at the hospital, where Finley did an amazing job while getting his blood drawn for labs. We got to see one of our favorite gastroenterologists. Fun fact, that doctor was one of the first two doctors who saw Finley when he was admitted to the hospital as a baby. We’re extremely fortunate to have had such a great care team over the years.
The doctor told us that an intestinal bleed likely caused what we saw, but based on the photos and information we shared, it seemed minimal. We hoped to rule out a bigger issue when the test results came back. Thankfully, the results were favorable and showed no major bleeding or other unusual issues. Apparently a small bleed like Finley’s can occur in liver disease patients, and while it’s something we need to watch, that day’s incident turned out to be more scary than anything else.
We finished up our time at the emergency room, breathing easier than we’d been a few hours before. Jackson had also been amazing, enjoying playing on the Nintendo Switch. Dani and I hadn’t eaten anything, so we took the boys to one of our favorite restaurants near the hospital. It was a nice ending to what had started off as a frightening situation.
That day was a reminder that even if Finley’s health is good one day, that can change in an instant. It’s not an experience I want to repeat anytime soon, but I know that there’s always a potential issue looming when raising a child with Alagille syndrome. Hopefully, we’ll see the doctor only on our regularly scheduled visits. But for now, this experience was a good warning to stay prepared for what might happen next.
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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