What to Expect With Pediatric Pyeloplasty: A Parent’s Real, Unfiltered Experience
It’s 4 a.m. two days after my 2-year-old son Leo’s pediatric pyeloplasty, and I’m sitting on a lumpy plastic hospital chair covered in grape jello. Leo is propped up on pillows next to me, one hand tangled in the neck of my sweatshirt, the other trying to bat at the swinging catheter bag hanging off the bed rail. The TV in the corner is playing a muted rerun of Bluey that I turned on three hours earlier when he wouldn’t settle, and the only other sound is the beep of the vital sign monitor down the hall. Three months before this, I’d spent every free night scrolling the internet for parent stories about this surgery, and almost none of them mentioned the jello, the lumpy chairs, or the way you stop caring that your clothes are sticky when your kid just wants to be held. Most posts are either overly medical, breaking down sutures and success rates, or overly dramatic, focusing on the worst-case what-ifs. No one talks about the day-to-day, the small stuff that takes up most of your time before, during, and after the procedure.
Leo’s UPJ obstruction, the blockage that required pyeloplasty, was spotted on a prenatal ultrasound. Our doctor told us it was common, about half the time it resolves on its own, so we just did regular checkups. When he turned 18 months, his latest scan showed the blockage hadn’t gotten better, and the affected kidney was functioning at 38%. Our pediatric urologist said laparoscopic pyeloplasty was the standard fix, with a 95% success rate for kids his age. I left the appointment, sat in my car in the grocery store parking lot, and ate a family size bag of salted M&Ms before I drove home. I still couldn’t find any real answers about what life would actually look like after, so I figured I’d write down what I wish someone had told me.
Before surgery, the hospital gave me a 10-page packet of instructions, but it didn’t mention that fasting a toddler for 12 hours is brutal. I learned to hide a sippy cup of ice water in my bag for the morning of, and most nurses will look the other way and let your kid have a few sips to tide them over before they go in. Pack two portable chargers, one for each parent, because all the outlets in the pre-op and recovery areas are hidden behind beds and heavy equipment. Bring your kid’s favorite stuffed animal, obviously, but also bring your own extra sweater—hospital waiting rooms are always freezing.
When we got discharged, we had two catheters in place that had to stay for a week. No one told me how to dress a toddler with external catheters. I figured it out by accident, and it’s the tip I pass on to every parent who asks: buy one pack of underwear a size larger than your kid wears, cut a small hole in the side seam, and pull the tubing through that. It keeps the bag snug against their leg, stops it from tugging on the insertion site when they move, and lets them wear their regular sweatpants or shorts instead of being stuck in a loose hospital gown for a week. I dug out my old baby carrier that I’d packed away in the back of the closet months earlier, too. Carrying him nonstop for a week would have wrecked my back, and the carrier kept him close and the tubing stable when we walked around the block to get out of the house. When he was cleared to go back to daycare two weeks after surgery, I emailed his lead teacher a week early, walked her through what to watch for, and brought extra changes of clothes. She was happy to have the heads up, and it made the first week way less stressful for both of us.
A week after discharge, we went back to get the catheters removed, and everything looked good. I was so relieved, I thought the hard part was over. Then a week after that, Leo started having accidents. He’d been partially potty trained before surgery, going a whole day without a wet pull-up most of the time, and suddenly he was wetting his pants three or four times a day. I panicked, called the urologist, convinced we’d messed something up. He told me this is way more common than people talk about. All the disruption to the bladder, the irritation from the catheters, the shock of surgery on a little kid’s body messes with their routine and their awareness of when they need to go. The worst thing I could do was push him to get back on track faster.
What worked for us? I threw out the sticker potty chart I’d hung on the bathroom wall, put him back in pull-ups full time for a month, and didn’t say a word about accidents when they happened. No reminders, no scolding, no extra forced trips to the bathroom. By the end of that month, he was back to his old routine, no lingering issues. If I’d pushed it, I’m sure we’d be dealing with power struggles and potty anxiety a year later.
It’s been 18 months now. Leo runs around the backyard, climbs the tallest jungle gym at the park, eats way too many goldfish crackers, just like any other 3-and-a-half-year-old. His last checkup three months ago showed his kidney function is up to 48% and still improving, which is exactly what the doctors hoped for. We still go back for checkups every six months, and I still feel a little twist in my stomach when we’re waiting for the ultrasound tech to call us back. There’s no big perfectly wrapped ending here; there’s still a small chance the blockage could come back, and we’ll have to do it all again. But most days, I don’t think about it. What I do think about is how unprepared I was for the small, boring, messy parts of the process that no one talks about. You don’t need to have a big inspirational journey through this. You just need to remember to buy bigger underwear, pack an extra portable charger, cut yourself some slack when your kid wants to be carried more than usual, or when you eat a whole bag of M&Ms in the parking lot after a scary doctor’s appointment. Things move slow, they get better, and most of the hard parts are the small messy ones no one writes about.
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