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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Wait. Breathe. Wait.

wait breatheIn late December, we received decisive word from the cardiothoracic surgeon that he could fix the tangle in our daughter’s chest. I was standing in a hotel lobby overlooking an indoor waterpark, crouched against the heating vents, waving on my family and our friends to go ahead without me. I pressed the phone to my ear, memorized the surgery date and, with all the time in the world, ended the call to begin the wait.

We had decided to wait nearly five months.

The surgery was both crucial and not-an-emergency. It had to be done, but it could be held off until a convenient time. Putting aside the sarcastic question of when is it a good time for you to risk your daughter’s life?, it seemed wiser to wait for the next school vacation, which was spring break. I sat there in the lobby for a moment, staring at the Christmas tree. It was impossible to picture the next months, how they’d spread out in front of us: both the last sumptuous buffet before a fast and the last ten miles of a triathlon’s bike ride before the marathon begins.

With no other choice before me, I put my phone in my pocket and made my way to the waterpark. Continue Reading…

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Not Her Heart

heartWe entered the children’s hospital on a dark December evening. We didn’t bring a child.

Up the escalator to the lobby, to the registration desk for our badges, we made our way through the mazes of floors and elevators until we reached a place that looked like nothing we’d ever seen before: a carpeted hallway, two small couches, and an empty coffee table outside a closed door with no window.

We were not visiting the doctor in an examining room, we learned. There would be no paper-covered table, no swiveling chair, no cheerful posters. We were visiting the doctor in his office itself.

The door swung open, and he shook our hands. “I remember you guys,” he said, smiling. “It’s nice to see you again.” Continue Reading…

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A Test She Couldn’t Fail

glowheartWhen I was pregnant with my younger daughter, Sammi, I worked in an aging office suite with a highly-coveted tiny kitchenette. Other departments of the same non-profit had to go to the basement to retrieve and reheat their lunches, but our little corner of the building had a full-size refrigerator and a microwave.

That microwave must have been older than I was. In the years before having children, I often warmed my cold fingers in front of it as heat leaked out the seams in the door. Once I was pregnant, I wouldn’t even pass by the cubby where it rested if I knew someone was using it; I was afraid the radiation was seeping out with the heat, and I didn’t want to put my unborn child at risk of cancer before she was even born.

Then she was diagnosed with a rare congenital heart condition at the age of 13 months, and in addition to the chest x-ray she’d already had, she had to be put under general anesthesia so that her surgeon could get a clear picture of her vascular anatomy via computed tomography — also known as a CT scan. An IV allowed the flow of a contrast solution into her veins and arteries so that they would all light up in the scans. I sent her in — all sixteen pounds of her — and tried not to think about how much radiation she was absorbing. They needed those pictures. It was the only way to get them. Continue Reading…

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