Keeping up with medical appointments, even when my son is stable
During a busy summer, it's easy for things to fall off my radar
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As my summer in the Pacific Northwest comes to a close, I’m reflecting on everything I’ve done. Time has flown by so quickly; when raising kids, the days seem long, but the months and years go by fast. And after my youngest child, Finley, was born with the rare genetic condition Alagille syndrome, his early days felt like an eternity.
I no longer have to think about Alagille every day because Finley’s stable and doing well. My family enjoyed the summer, just as I hoped we would — but my wife, Dani, and I realized one important thing had slipped off our radar.
Because of Finley’s liver disease, he has to see multiple doctors and specialists throughout the year. In addition to clinic visits, there are blood draws, ultrasounds, and echocardiograms. Early in Finley’s life, those visits were frequent as his health was closely monitored.
Finley is now 5, and both his Alagille syndrome and his pulmonary stenosis are considered stable. Because he’s doing well, the visits are more spread out. We see his gastroenterologist twice a year, and his cardiologist and other specialists once a year. After years of struggling to balance work, appointments, family, and my own life, it’s been nice to have the dust settle a bit.
Finley loves picking blackberries at the end of summer. (Photo by Jay Sandstrom)
Still, it is my responsibility as a parent to schedule and attend those appointments. Realizing I’ve forgotten one is not a good feeling. It was almost easier to keep track of Finley’s appointments when they were more frequent. Now, it’s easier to forget to schedule them, especially when I have to wait several months for the books to open. I get busy with life and my kids, and it slips off my mental to-do list.
This summer in particular was busy but fun for my family of four. We took a long vacation, entertained visiting family members, kept busy with neighborhood friends, and went on a few local adventures. There have been very few free weekends. I wouldn’t change a thing, except that, with no doctor’s appointments on the horizon, I forgot that Finley was due for his six-month lab work.
Is it the end of the world that his labs will be a few weeks late? No, of course not. But it’s a good reminder that I need to stay on top of things. Finley is many years away from being in charge of his health, but even now, I want to set a good example. Hopefully, his condition will remain stable for a long time, but without regular checkups and monitoring, we won’t know for sure.
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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