Here’s the crazy thing about taking my 8 year old daughter to feeding therapy: no one important really knew we were there.
There was a complex set of circumstances that brought Sammi to the cheerful basement office suite forty minutes from our house. Unaware of this were a host pediatric medical specialists: an office of gastroenterologists, a cardiothoracic surgeon, an otolaryngologist, an endocrinologist, and her general pediatrician. Though all of them examined her, declared her capable of eating, and recognized that she did not, in fact, eat well, not one of them had recommended feeding therapy.
They didn’t recommend it when, despite the compression on her esophagus having been surgically relieved possibly for the first time in her life, she failed to eat any meal in under an hour — including a simple bowl of cereal at breakfast. Continue Reading…
After six weeks on a fat-free diet and a week on a low-fat diet, my eight-year-old daughter Sammi was officially released from all her food restrictions by her cardiothoracic surgery team. Her chylothorax — a leak in the thoracic ducts that process fat — had completely healed.
The two of us had decided to spend the day together in downtown Chicago, starting with a visit to the Hershey Store. After all, it had been nearly two months since she’d had free rein to eat anything she wanted. I thought that surely she would gorge herself on candy while I watched gleefully.
Instead, she nibbled timidly and said, “I’m full for now.”
Yesterday was the two-year anniversary of the surgery that changed Sammi’s life.
This morning, in an effort to remember a particular detail of that time, I logged into the hospital’s patient information system. I clicked aimlessly, seeing everything with the eyes of experience and after-the-fact understanding. All these test results — why didn’t I read them in detail back then when they could have done something more than remind me of how late I put my research skills to work?
The real answer is that I didn’t know how to access charts, back then. They weren’t online. They weren’t sent to us by mail. All we got was the occasional placating phone call. Oh, and a stack of bills.
Now here, in the charts, are all the comments and clues that make sense in retrospect. Like re-reading a mystery after I already know who the killer was, I am seeing the telltale signs in notes on test results and procedures: muscle visible in her esophagus, tonsils visible on a chest x-ray, no mention of her abnormal aortic arch on that first diagnostic endoscopy. The information was there for anyone to find: here is why she is always sick, here is why she cannot eat, here is why no doctor can explain her idiopathic results.
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.” Continue Reading…
Over and over in my head, I dissect what went wrong with my advocacy for my daughter.
When she was just six weeks old, we pushed to have her raspy, gurgling breathing evaluated by an otolaryngologist even though her pediatrician said it was nothing. It wasn’t nothing; we were justified in our followup.
When she was four, we’d dutifully tried to wean her from her reflux medications, then taken her to a gastroenterologist when she responded poorly. We’d said yes to the endoscopies, accepted the diagnosis of eosinophilic esophagitis, and diligently followed the six food elimination protocol. We read labels, scoured our kitchen, protected her from potential allergens like fierce animal parents. We did everything they asked, and advocated for her emotional well-being in school and with friends.
We did everything we could have done except tell her doctors to read her chart. If we had thought to ask them, hey, do you think this esophagus problem could have anything at all to do with her aortic arch?, that might have been all we needed.Continue Reading…