Handouts for Doctors

Have you read my chart?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 a year old, the sound of milk rattling in her throat got us another appointment with the otolaryngologist, and even though the pediatrician didn’t think it was strange that our one-year-old would not eat solid food yet, the otolaryngologist took note. The fact that she would hold one-fourth of a blueberry in her cheek for hours rather than swallow it was a sign that her esophagus was so narrow that even that sliver of food was too irritating to pass through. It was a clue. Somehow, I’d known to tell someone, and it was part of the path to diagnosing her vascular ring.

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…

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Fragments and Money

fragmented winterBetween the December day when we received news of our daughter Sammi’s impending cardiac surgery and the surgery itself were nearly five fragmented, breath-holding months. During that time, life went on as usual: school, work, meals and concerts and the usual patterns of life with two children.

My days, already naturally broken into small chunks of varied activities, crumbled into bite-sized pieces of work and daily chores mixed with anxious Google searches and conversations over phone and email. In the autopilot that clicked on during repetitive activities like cooking or walking my children to school, I sometimes found myself unable to remember what had been happening in the previous ten minutes. How had I gotten to this corner? When did I add the onion to the pot?

Throughout, I was honest with friends and family about what was happening. Many had been with us for the Sammi’s entire medical journey. They had prayed and visualized a pink and smooth esophagus on each of her many endoscopy days. Some had arranged a spot in their pantry for a new, unused cutting board and disposable baking pans so that they could invite us for dinner during the hardest weeks of the six food elimination diet. These people were experiencing this with us, many of them nearly as deeply in love with Sammi as we were. They deserved to be in-the-know, and so I held very little back. We talked openly about the surgery and what it would entail; we shared whatever we knew and accepted their promises to hold us in their positive thoughts, whatever shape those took.

But some of them — more than a few of them — asked us the multimillion-dollar question: are you thinking about a lawsuit? Continue Reading…

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Sister in the Periphery

girlsThe story of a sick little girl is compelling. The story that spans across years of doctors and procedures, melting into each other in a pool of brackish gloom, punctuated by moments of glittery hope — that’s good reading, right there. You want to know: did she get better? did they figure out what was wrong? how did it all turn out?

That’s the story I’ve been telling about our family, and it’s true. It has driven every other decision in our life, in one way or another, for as long as our younger daughter, Sammi, has been a force on this earth. Figuring out how to keep her healthy, to help her breathe, to feed her and manage her doctors’ appointments and procedures and surgeries, to hold my own head up and make it through my own fears each day: these are the things that dictated the way we navigated the world.

But there is another story in the periphery. We have another child.

I don’t write much about my older daughter Ronni largely because she is now thirteen. She deserves the right to decide what information about her goes public, and so I’ve refrained from sharing her experience so far until now. Until yesterday. Continue Reading…

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When It Looks Like a Blueberry, It’s Probably a Blueberry

blueberry

My daughter Sammi was born at 41.5 weeks of gestation at four pounds and eleven ounces. I have spent the last ten years reciting those statistics in reverse.

“So mom, what was her birth weight?” is often one of the first questions a pediatric specialist asks.

A pause for my answer, and then I could chant it along with them: “So was she premature?”

No, she wasn’t, I have to answer. She was what they call post-term, which is the opposite of premature. It’s late. She was waiting it out inside me, and then when she came out as tiny as a premature baby, everyone scrambled. She was totally proportionate — filled out and lovely, just miniature. The hospital did genetic testing and found nothing out of the ordinary. That’s when we began to hear two different lines of justification for her size. Continue Reading…

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Waking Up to the Pill Cutter

pillcutterIt was the summer of 2011 when, with no swallowed steroids and a totally unrestricted diet, my daughter Sammi was declared to be “in remission” from eosinophilic esophagitis, the disease with which she had been diagnosed almost exactly a year prior. Though we had turned our lives upside down to follow the prescribed elimination diet — including replacing our cutting boards, pots and pans to avoid potential cross-contamination — we were suddenly thrust, untethered again, into “normal life.”

Except one thing. Continue Reading…

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