Sunday, January 13, 2008

Club Meds

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The timing of the weekend may have made us predisposed to being emotional. Or maybe I'm still not used to hanging around specialists' offices with cold and spooky equipment.

Either way, I'm still moved thinking about a defiant little dude who absolutely refused to go into radiology. It was Friday. We were in a waiting room at Beaumont Hospital before Hope's barium swallow test to examine her upper gastrointenstinal system and get a better handle on her feeding issues.

The kid was about 7. He was clearly no stranger to waiting rooms. He wore a cartoon-decorated hospital gown and a serious frown. His mother was trying to cheer him up: "No needles today! Isn't that good? It won't take long this time. You should be happy."

The kid hung his head. His mother kept talking, trying to encourage him. Eventually, he stuck his fingers in his ears and screamed: "Please Momma! Stop talking! Leave me alone! Leave me alone!"

Five minutes later, we were undressing Hope before her 15-minute test. She lay on a massive, movable X-ray machine and sipped milk spiked with sugary barium, a chalky additive that contains enough metal to show up on X-rays and allows doctors to trace the flow of milk. It would have been cool if it wasn't so freaky. Eying a TV monitor, we watched as pillowy puffs of milk eased down her throat. They looked like an inkblot and moved like a tiny jellyfish, shimmying and contorting until settling into her stomach.

We got the test because Hope isn't a world-class feeder and it is standard procedure for CdLS kids. True to form, the results weren't perfect but could have been worse: Hope doesn't have a malrotated bowel, but she does have a mild hernia in her stomach --a hiatal hernia -- that bulges slightly into the opening of her windpipe. It no doubt contributes to her difficulty sometime keeping food down. Sadly, it's a condition more typically associated with overweight, heavy smoking 60 year-olds than 2 1/2 month-old girls.

We're not sure what's next. That's a decision for Dr. Spitenup. The sense I get is that it's not the biggest deal, could be mitigated by Prevacid to minimize the amount of acids that could come back up, but may eventually require surgery if Hope has to go in for something else.

We were were back into the waiting room after comparing Big Ten notes with the doctor who performed the test. That's a requirement for docs delivering bad news: Always follow-up with something trivial, smile, then run like hell. This guy looked at Mo's MSU hat, remarked "I like to look at hats. I am from Wisconsin" and bolted out the door.

The sad little boy was still making his stand in the waiting room. Now, there were two doctors and two nurses standing above him. His head bowed deeper, he refused to look up as they begged "C'mon! What do you say? Let's do this test. It won't take long!"

We dressed Hope, put her in a car seat and walked out the door while the scene still unfolded. I left feeling incredibly sad for the kid -- wondering why he's been the hospital so much to be so adamant, feeling sorry he has to go through that and realizing that we're part of the same club now too.


Lisa said...

Sounds like relatively good news for Hope. I know exactly what you mean about the little boy. When we take Liz for big specialists appointments as she gets older, we're trying to do something "fun" walk around the city, grab a bite, etc.. But it's just not possible every time...especially when their are so many.
Children's in Chicago is also good and they've got all of these toys, puzzles, etc.. and even juice and candy for the kids who can have it and are waiting.

Karen said...

Sounds like the barium swallow went relatively well. Hopefully the hiatal hernia is small enough not to need surgery.
I feel sorry for that little guy who didn't want his test. You are right about being part of the club - the one that none of us really wanted to join.