I’m grateful my son has a care team that truly cares
Finley's doctors go the extra mile to ensure he receives the best care
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When you’re raising a child with a rare disease like Alagille syndrome, you become very familiar with their care team. My 5-year-old son, Finley, has had the good fortune of seeing mostly the same doctors for his entire life. They know him, his journey, and what my wife and I have experienced as his parents. Our care team truly cares, and I couldn’t be more thankful for that.
Last week, Finley had one of his routine gastroenterology (GI) appointments. We see our GI team a few times a year to check on his status, review his labs, and address any questions. I feel extremely fortunate that we’ve seen the same two doctors for all of Finley’s GI appointments. They have been with us from the beginning. In fact, they were the first two doctors we met after Finley was admitted to our local children’s hospital following his Alagille diagnosis at 1 month old.
My wife and I look forward to every GI visit, especially now that Finley is old enough to remember his doctors. We know they’ll not only be prepared to take care of Finley, but also remember the little details of his story. They know how far he’s come since infancy. Finley is far from their only patient, but they make us feel like he’s important.
Finley loves getting measured at the doctor’s office. (Photo by Jay Sandstrom)
Even the doctors we see less frequently, such as Finley’s pediatrician, go the extra mile with his care. Our pediatrician always checks in with our other doctors before Finley’s yearly checkups so that she’s aware of what’s going on with his Alagille syndrome. Even though I think Finley was her first Alagille patient, she demonstrated great care by taking the time to learn how best to support him. I am so thankful for that.
About two years ago, the cardiologist that Finley had been seeing since his diagnosis moved on from our children’s hospital. That was the first time Finley lost a member of his care team. Finley has mild pulmonary stenosis and sees a cardiologist once a year to monitor that condition, and in the past two years, he has seen two different providers. Both were great, but it’s been odd for me to see different doctors after getting used to consistency.
When I step back and look at the bigger picture, though, I realize how fortunate Finley is to have had such consistent care throughout his five years of life. And I hope that can continue for as long as possible.
I know that change is inevitable. But for now, I’m cherishing the team we have. I appreciate how much they care about Finley — not just his health, but who he is.
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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