Update October 2015

We've been living overseas since about the time this blog petered out. There are lots of funny Mo-and-Curly-abroad stories to share -- I'm exploring the best way to do that.

Thanks for tuning in!

Friday, July 24, 2009

Curly's pull-thru experience

I'm following the stories of two Facebook friends who's little ones just had their pull-thrus for Hirschsprung Disease. It brings back a rush of memories from Curly's pull-thru, just over a year ago.

I wasn't blogging then, so I want to capture that experience for the record. I hope I don't come off as complaining, but - well, last night I saw "A Comedy of Errors" - and that keeps popping into my mind when I think of Curly's last surgery. Though maybe "comedy" isn't the right word.

No room for you!
When we checked into the hospital, I got a blank stare when I gave Curly's name. I gave the name of his surgeon and PAs, and they started making phone calls.

For an hour, Curly and I sat in the lobby while the receptionist clicked away at her computer and made more phone calls. I just kept thinking about how much we'd been looking forward to this day, to finally get this surgery over and done with. And how my wonderful mother-in-law had taken off from work and driven 3.5 hours to care for Mo, and how Daddy had also taken off from work. Plus my maternity leave was just about to end, and if we had to reschedule, I'd have to work something out with my employer too.

And then suddenly, the receptionist came over with our room number and directions on how to check-in.

No insurance for you!
So we got settled into the room. They brought in a crib and hospital jammies for Curly. And we waited for his IV and NG tube to get put in.

And we waited. And waited some more.

Finally, a resident came in and told us that they weren't going to do an IV or NG tube because our insurance was saying we weren't covered (!) and we'd need to resolve that issue before they did anything invasive to Curly.

Here's the thing with insurance for babies. It can take a long time to get their ID cards. Think about it, they need to get Social Security numbers issued first. At the same time, the health insurers don't want to recognize coverage without an ID card. This is why we got an $80,000 bill in the mail for Curly's NICU stay (and that was only the first bill)!

So I make some frantic phone calls. Luckily, I have a great Benefits Department at work who knew my situation. We got it cleared up. Curly got his IV (that would be his 28th IV, yes, I was counting) and NG tube. Bowel prep ensued.

No surgery for you!
Curly was scheduled for surgery at 7 a.m. on a Thursday. At least, that's what we thought. So he went through the bowel prep Wednesday and Thursday morning, which meant nothing to eat and IV meds to flush his bowels. And then we waited. And waited. And waited. The entire day.

In the early evening, we got a visit from our very apologetic surgeon. Because of a scheduling issue, Curly wouldn't get his surgery until the next day - Friday, at 9 a.m. This scheduling glitch explained why they weren't ready for us when we checked in, and why our insurance wasn't prequalified. The surgeon had been expecting us; the hospital and operating room were not.

So we fed Curly twice, and then started with the bowel prep all over again. (Poor baby.)

And finally...
Finally at noon Friday, Curly went in for surgery. We expected a 4-hour procedure. The surgeon wanted to just do the pull-thru and leave in the colostomy for a while to let the pull-thru heal. He expected that he'd be able to do it laparoscopically.

After the 4 hours passed, we got a call that something had changed. When they put me on the phone directly with the surgeon who was still in the operating room, my heart almost stopped I was so scared. He explained that the pathology showed Curly had a longer segment of non-functioning colon than the earlier labs had detected. That meant he had to take down the ostomy in order to do the pull-thu. He also had to cut his belly wide open.

What started as a 4-hour procedure took 7.5 hours.

Happily ever after
But here's the thing. After all the chaos, Curly's surgery went great - plus, he didn't have to endure a whole third surgery, because they took the osotmy down with the pull-thru. And another unexpected bonus: no more colostomy bags!


His recovery was painful but, thankfully, it went fast.

We celebrated his first poopy diaper a couple days later. He ate and grew like a champ. It's never as simple and perfect as you hope (7 months of anal dilations, 6 bowel infections), but I'd still classify Curly's post-surgery experience as "happily ever after."

1 comment:

  1. You're a lovely woman. I have tears in my eyes reading this, being such a fresh experience and all. I'm glad you shared. So much of it is familiar. I'm really glad for your happily ever after! It's quite the process, no? We're still hoping for ours.

    ReplyDelete

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