Preparing my son with Alagille syndrome, and myself, for surgery
What happens when you worry about a procedure you're also sure will work?
Preparing a child for surgery is scary, as I’m being reminded.
My 4-year-old son, Finley, is scheduled to have a small procedure to fix a hydrocele, a swelling in the scrotum. It was there when he was born and is quite common in boys born premature. Normally they resolve themselves, but Finley’s hydrocele needs a permanent solution. And because of his Alagille syndrome, the preparation phase has a few extra steps.
I’m beyond thankful for his urology team’s thorough work. Though this procedure is fairly straightforward, the doctors are taking every precaution to make sure they understand his Alagille syndrome diagnosis and how it may affect his surgery. They work with our gastroenterologists (GIs) to double-check that he’s OK to receive anesthesia. No stone is left unturned, which for me, as a parent who’s having a tough time preparing for this surgery, helps ease my worries.
Thankfully, Finley’s condition is stable, and he’s been doing well; his surgery, hopefully, won’t be an issue. He’s had two other procedures, and they went about as well as we could ask. But there’s always the fear of the unknown, which has often been a theme in my columns.
The specter of uncertainty
Sure, Finley’s doing great right now. But what happens if his liver takes a turn for the worse? Will it be immediate, or will it be gradual? Will he continue to progress as he has, in a way that’s kept his doctors happy? Or will he hit a snag that requires a dramatic change in his care? No matter how well things are going, these concerns never seem to dissipate. I assume they never will.
Finley likes to be adventurous at the park. (Photo by Jay Sandstrom)
With this surgery, which isn’t directly related to his Alagille syndrome, those worries are still amplified. It should be a quick procedure, but I’m not looking forward to the wait.
On one hand, I’m sure that all will go well, and that the hardest part will be keeping a superactive 4-year-old from too much movement during his recovery. But it’s hard not to think about worst-case scenarios. Going through his extra surgery previsits, ones that wouldn’t be necessary except for his rare disease, brings those thoughts front and center.
Thoughts of those scenarios fade in our daily lives. But without fail, they rear their heads on our hospital visits. I’ll never be able to visit our children’s hospital without being transported to the week we spent there with Finley in 2021. Using a cart to take supplies from the car to our shared room. The COVID-19 protocols we endured daily. Meeting our GI team for the first time, and not knowing we’d still be working with them all these years later.
Those were the worst times of Finley’s life, and though they’ve been put in the rearview mirror, the memory endures. I’ll continue to work on processing my feelings and emotions around these visits, knowing that the reason we’re there is to give Finley the best care we can. I know they’ll do an amazing job taking care of him, and I’ll try to focus on the positives as we navigate his recovery.
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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