Optimism replaces worry following a post-surgery scare

Back in August, I wrote about managing my worries as we prepared for a small surgery to correct a hydrocele in our 4-year-old son, Finley, who has Alagille syndrome. Even calling it a small surgery causes me anxiety, because no matter how routine the procedure is, there are still many uncertainties involved.

Thankfully, the surgery went well. Nevertheless, the aftermath caused me renewed worry about his Alagille syndrome. I’d like to share a little about what our follow-up appointments have been like in the past month.

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Finley practices using his anesthesia mask before a recent surgical procedure. (Photo by Jay Sandstrom)

After surgery, Finley was in the recovery room when my wife discovered swelling that started above his left ear and extended to the back of his skull. It appeared suddenly and caused us to be alarmed. I’d given him a bath earlier that day, and the swelling wasn’t there at the time. Our healthcare team was puzzled. The idea of us going home quickly faded as we realized that no one knew exactly why Finley was experiencing this.

I imagine that this type of symptom following an unrelated surgery would cause any parent to be concerned, but add in a rare condition like Alagille syndrome and that worry is heightened. In response, we consulted both our neurology team and our regular gastrointestinal (GI) team, who are our primary care providers at the children’s hospital. It felt somewhat routine to see the GI team, but it was also unusual because we were there for what a CT scan had revealed to be a small hairline fracture in Finley’s skull, which caused the bleeding.

We spent the night in the hospital for observation of Finley and received a long list of follow-up appointments to schedule. As of this writing, those appointments are nearly all wrapped up. So what have we learned?

First, Finley underwent a DXA scan, an imaging test that measures bone strength, which revealed that his bones are within the normal range. Alagille syndrome can lead to bone density issues, so we were concerned about the fracture. Fortunately, it doesn’t appear that bone density was a contributing factor in this case.

Finley plays video games in the waiting room before having an MRI. (Photo by Jay Sandstrom)

Next was an MRI. Finley did well with the CT scans immediately after surgery, but he wasn’t a fan of the MRI. Who could blame him, though? The MRI machine is incredibly loud and probably frightening for a 4-year-old. Thankfully, notwithstanding the fear, his results were reassuring. Everything appeared normal, and the bleeding had resolved. No further follow-up appointment with the neurology team was necessary. “No more follow-up with us” are some of my favorite words to hear in the hospital.

Following that, we had another visit with our GI care team. We typically see them every six months, and our last appointment was in July. This one was mainly for follow-up after the surgery scare to see how we were all doing. Not much had changed since our July appointment, and the key takeaway was that whatever had happened was unrelated to his liver disease.

So will we ever know what caused the swelling? Probably not. Finley is a bold and daring 4-year-old, so it’s possible that he bumped his head at some point and the swelling only manifested after surgery. We may never know exactly what happened, but I do know that, despite the frustration from all the appointments, I am thankful for the thorough care Finley has received. It is reassuring to know that, no matter what challenges may arise, he will be well taken care of. Now, hopefully, we can avoid any more scares in the near future.

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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