What I Learned As A Parent Going Through Pediatric Pyeloplasty: My Real Experience
2 a.m. in the pre-op holding area, my 3-year-old son Eli is curled up on my lap with his frayed stuffed fox, and the only thing I can taste is the stale granola bar I bought from the vending machine down the hall. The anesthesiologist just asked if I’m ready to go back with him, and my throat feels too tight to answer. Three years of waiting for this moment, ever since the 20-week ultrasound showed extra fluid in his left kidney, and I still didn’t feel ready.
We got the diagnosis of PUJ obstruction, the blockage that leads to needing pyeloplasty, before Eli was even born. For the first two years of his life, we did every-six-month ultrasounds, and the urologist said it looked like it was resolving on its own. Then at his 2-year checkup, the swelling had gotten worse, and his kidney function had dropped to 38%. Surgery was the clear next step.
Everyone I told said the same thing: it’s routine, right? It’s minimally invasive now, he’ll bounce back in no time. And that’s all true, for the most part. But no one talked about what it feels like to be the parent waiting, or the small, messy details of recovery that catch you off guard. I spent hours googling “pediatric pyeloplasty parent experience” when we were going through it, so I wanted to write down what actually happened, and what helped.
The surgery itself went exactly as planned. It took two hours, and the surgeon came out smiling, said the blockage was clear, everything went as expected. The recovery room was harder than I expected: Eli woke up disoriented and sore, kept tugging at the catheter, and I sat holding his hips to keep him still for an hour and a half, my legs falling asleep under him. We stayed two nights in the hospital, and by the time we left, he was already asking when he could go to the playground.
The first lesson I learned came before we even went into the operating room the first time: you can ask for numbing cream for the IV 20 minutes before the team comes to place it. I had no idea this was a request I could make the first time around. The nurse tried to get an IV in my squirming, terrified 3-year-old, missed twice, and we ended up with 20 minutes of screaming that left both of us crying. When we went back a few weeks later for stent removal, I asked for the numbing cream ahead of time, and the whole thing was over in 30 seconds with no fuss. It’s a small ask, but it makes a huge difference.
Second, pack one or two new, tiny toys that cost less than 5 dollars, and hide them until you get to the hospital. Eli was bored of his favorite fox and his usual go-to puzzle within an hour of waiting. That 2-dollar rubber T-Rex I grabbed on a whim at the gas station on the way to the hospital kept him distracted for almost an hour, which got us through all the pre-op checks. Old favorites are fine, but something new holds their attention way better when everything else feels scary and off routine.
The hardest part for me after we got home was the lifting restriction. The surgeon said I couldn’t lift anything heavier than 10 pounds for two weeks, which meant I couldn’t pick Eli up to put him in his car seat, high chair, or bath. I have an older daughter who was 5 at the time, and my husband went back to work after a week off. I thought I could handle it on my own: Eli was feeling fine after a few days, so I’d help him climb, or lift him little by little. Two days in, I pulled a muscle in my back and ended up stuck on the couch with ibuprofen, which made everything harder. The fix was simple: I asked my sister to come over for an hour every morning and every evening for the rest of the two weeks just to help with the big lifts. If you don’t have family nearby, ask a friend from playgroup, or check if your hospital has a volunteer program for parents recovering with kids post-op. It doesn’t take much help to make a huge difference.
It’s also okay to call the doctor with what feels like a silly question. Three days after we got home, Eli had a 100.4 fever, and I panicked and called the after-hours line at 10:30 p.m. I felt stupid for bothering someone after hours, but the nurse was totally calm, told me low-grade fevers are common the first week post-op, and just told me to keep him on acetaminophen. Later, his urologist told me half of their after-hours post-op calls are for exactly this, and it’s way better to call than wait if you’re worried. No one will judge you for it.
It’s been three years now. Eli is 6, he plays rec soccer, climbs trees in our backyard, and eats way too many gummy snacks after school. We go for an annual ultrasound to check his kidney function, and it’s held steady at 45% for two years now, which is totally normal for his situation. Most days, I don’t think about the surgery at all.
Sometimes, though, when he comes to me complaining of a side ache after running around, I feel that little jolt of anxiety. It doesn’t go away completely, not for me anyway. Last month, he scored his first goal at soccer practice, and I was cheering so loud I forgot to check if he was holding his side or anything. Afterward, he ran over to me covered in grass, yelling for a blue popsicle, and that little jolt didn’t even hit me until we were driving home. It’s still there sometimes, that quiet what if. But so is he: loud, messy, fast, totally fine. That’s the part I never read about in any pre-surgery guide. Most days, the worry fades into the background, and you just get back to regular life.
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