Facing unexpected complications after a routine surgery
With Alagille syndrome, we never know what might happen
The last few weeks have been a roller coaster as we near the end of summer, prepare for school to start, and navigate a surgery for our 4-year-old son, Finley.
Finley was born with a hydrocele, a swelling in the scrotum that is common in premature boys. Often these resolve on their own, but unfortunately, Finley’s needed intervention. With his Alagille syndrome, there are extra steps involved in a procedure like this. But we never expected there to be any complications.
We were wrong.
Finley is all dressed in his surgery outfit. (Photo by Jay Sandstrom)
Finley had been under general anesthesia twice before. When he was a couple months old, he had a liver biopsy, and at nearly 1 year old, he had a small urology procedure. Both went smoothly, so when the surgery to repair his hydrocele was scheduled, I wasn’t overly concerned. It is a fairly routine procedure, and we were supposed to be in and out within a few hours.
Unfortunately, we ended up staying overnight at the children’s hospital for the first time since Finley was an infant.
Looming unknowns
The surgery went exactly to plan, with the surgeon successfully draining and closing the hydrocele. Only one parent was allowed to visit Finley as he was waking up, so my wife, Dani, went back to his recovery room. She texted me a few moments later and said, “He has a lump on his head. I don’t think we are going anywhere.” My heart fell into my feet. It was excruciating to wait my turn to go see Finley.
When I got back to the recovery room, I could see the worry on everyone’s faces. Finley had a very noticeable squishy lump on the side of his head that ran from above his ear to the back of his skull. It was a large hematoma that was not present before his surgery. I had given him a bath that morning, and there hadn’t been anything there.
Finley takes the opportunity to be silly after a CT scan. (Photo by Jay Sandstrom)
Every doctor was stumped. The surgery was in his groin, so why did he have a head injury? It was a mystery.
Various specialists came to visit Finley, who was having a hard time. It was nearing 5 p.m. and he hadn’t eaten since 9:30 the evening before. But the doctors didn’t want him to eat until they knew for certain that he didn’t need another procedure.
Finley was taken away for a CT scan, and upon returning, he was offered a popsicle, only to have it pulled away out of caution. This caused a major screaming meltdown. I tried to hug him tight, but he bit me on the shoulder.
That moment almost broke me. Helplessness is one of the worst feelings I’ve experienced as a parent, and it’s one I have a hard time putting into words.
The neurosurgery team concluded that the hematoma was likely the result of a small hairline fracture in Finley’s skull. The bleeding was almost exclusively between his scalp and skull, which, in the grand scheme of things, was positive. While we couldn’t go home yet, the doctors determined he wouldn’t need another surgical intervention, so Finley was finally allowed to eat.
Finley was happy once he got to eat. (Photo by Jay Sandstrom)
Once we got settled in a hospital room, Finley was a happy camper. He got to watch shows on his tablet and order from the room service menu. With some food in him, he was largely back to his normal self. We tried to get as comfortable as possible as we stayed the night.
We were released the next day without much new information, though we have what feels like 100 follow-up appointments scheduled over the next few weeks. Thankfully, Finley has been doing great. Outside of being overly hungry and not loving the heart monitor stickers, he was a trooper.
Recovery has been going well, and he is back to all his normal activities. But this was simply another reminder of the looming unknowns that accompany medical complexities. We never know what might happen.
For now, we’re focusing on how well Finley is doing and are excited for him to start pre-K this month.
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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