My eight-year-old daughter took a long drink of water through a straw, and I waited on the edge of a pin (on the edge of her hospital bed) to ask her a question.
As the first few drops of liquid hit her tongue, she did what she’d always done when drinking: she puffed out her cheeks like a chipmunk and held the water there. Slowly, I watched her throat as she began to swallow. Her eyes widened, and she swallowed everything in her mouth at once.
Finally, I asked. “How does swallowing feel, Sunshine?”
She set down the cup on her tray and looked at me, her hands fluttering up to her chest, trailing IVs and tubes behind her. The late afternoon light through the far window didn’t reach her bed, and so, lit by fluorescent lights above and dazed by morphine, she rested back on her pillow and answered:
“It feels so different!”
“How so?” I asked.
“When I swallow, it goes down like ssshhhhhwwwwwwww!”
“And what was it like before?”
“It was like ccchhhhk, ccchhhhk, ccchhhhk…”
With her skin still clammy and pale, only hours out of surgery, she reached again for the cup, drank another gulp, and said, “It’s so cold when it gets to my tummy.”
***
This conversation, out of context, sounds like the sleepy, drugged rambling of any child just out of general anesthesia. For us, though, this conversation was an answer to several questions, the first of which was: did we really need to put her through this? The surgery she’d just endured was designed to untangle the snarl of esophagus and aorta that, ostensibly, was inhibiting her swallowing, causing problems ranging from hours of trapped food irritating her gullet to her general slowness in eating to her inability to grow more than the bare acceptable minimum each year. The likelihood that this surgery would solve the latter two problems hinged on us having proof of the first problem.
Put more simply: we suspected that things took a long time to go down her esophagus. We had seen evidence of that on a barium swallow study. However, Sammi had never known anything else, so we did not know how to tell if the surgery had solved the problem.
That “ssshhhhhwwwwwwww” was our answer.
Sammi had been dealing with some kind of esophageal compression for most of her life. In the years prior to this surgery, she’d been mistakenly treated for eosinophilic esophagitis, an allergic/inflammatory condition of the esophagus caused by a reaction to food proteins. Every time her gastroenterology team looked into her esophagus for the tell-tale signs of disease — white blood cells called eosinophils — they had filled it with air, making it impossible to see the compression coming from her aorta. Changing her diet to avoid potential food triggers had not made a difference, and so, from a very young age, Sammi had always experienced swallowing as “ccchhhhk, ccchhhhk, ccchhhhk…,” the sound of food and water going down, backing up at the spots where her esophagus was compressed, and then slowly squeezing past them. She had never known that swallowing was supposed to feel any other way.
Now, “ssshhhhhwwwwwwww.”
Over the course of the next few days in the hospital, I would watch as Sammi drank bottle after bottle of liquid quickly and easily. Her favorite was a bright blue electrolyte drink we named “Smurf Essence.” We would hand her a bottle and, shortly afterward, have to call the hospital food service department to bring another. This was the same child who, just weeks before, would bring the 12 ounces of protein drink from breakfast home from school with her.
I began thinking of a song, during those days, with which I’d fallen in love in college. A band called Poi Dog Pondering had a modest success with it on their first album. Called “The Sound of Water,” it reminds me now of those days in the hospital: dreamy, liquid, and both bittersweet and hopeful.
We had a new sound of water. It was “ssshhhhhwwwwwwww.”
I saw a picture of you
And it took me through
So many visions of you
I couldn’t stand it
But I sat it through.Ooh the sound of water
Aah the taste of water
Ooh the sound of water
Aah the taste of waterThis has been a Finish the Sentence Friday post hosted by Kristi from Finding Ninee. This week’s sentence is “The sounds around me…”
Related Posts









<3 I was enthralled!
Thanks — so were we! 🙂
Ohhh, I loved reading this. I read a lot of heartache – which is beautiful in its own way, but it’s always nice to read about happy endings too.
This was the beginning of the happy ending for sure!!!
Happy ending!
[…] you swung wide and angry in another direction as you tried to heal and grow the tiny, fragile, post-surgical version of your […]
I love love this and wow – going through surgery sounds like it was most definitely worth it for her. OOOH cool water 🙂
(so glad you linked up!)
Totally worth it!!!! Thanks, Kristi!
Love that sound. This sounds a lot like what a certain member of my own family has experienced, but nothing has really been found when tests were done. He is really unable to put on any weight, no matter what he eats or how much. He says he has trouble swallowing some things down. Glad you were able to hear this sound though. Sounds divine.
🙂
Kerry, I hate to be an armchair diagnostician, but I wonder if this family member of yours has been able to get a swallow study. You can read about this relatively easy test in this post on my blog. It would at least rule out a structural problem.
[…] daughter is eleven now, almost three years past her final surgery, two-and-a-half years past the time she first began eating well, two years past her dismissal from […]