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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A Healthy Family’s Thanksgiving

Thankful TreeFood and shelter. Family and friends. Good schools and teachers. I’ve been grateful for them every year as long as I can remember. This year, I am thankful for much more.

This Thanksgiving, I am grateful that none of my family members are in the hospital. No one is eating their Thanksgiving feast off a white tray while others take turns visiting. No one is disconnected from the big family meal because her heart is too connected to the hospital room and the child who is stuck there.

This Thanksgiving, no one is waiting for test results or surgery.

This Thanksgiving, I am grateful that none of us are following a medically prescribed diet. No one is reading ingredients in someone else’s kitchen, saying “excuse me, but what’s in that sauce?” No one is unpacking small, carefully-labeled plastic containers that hold a facsimile of Thanksgiving dinner, subtly resting her arms over her plate as “dangerous” food is passed over it on its way around the table.

This Thanksgiving, no one is on edge because of ingredients or cross-contamination.

This Thanksgiving, I am grateful that my marriage is intact. My husband and I did not break under the pressure of our daughter’s medical dramas. We did not stop talking about our own feelings and dreams when we became stewards of the feelings and dreams of our children. We have not stopped liking each other.

This Thanksgiving, no one has fallen out of love.

This Thanksgiving, I am grateful that my family is alive. My daughter did not die in the surgery that changed her life eighteen months ago; my parents are here and active; my husband and my older daughter have not been taken in a car or plane crash; I have survived every bike ride and run I’ve enjoyed.

This Thanksgiving, no one new is missing.

This Thanksgiving, I am grateful for the ways our bodies work. No one is struggling to help prepare the meal with arms in slings or missing. No one is pushing a walker to the table. No one is swallowing their food into a kinked esophagus, or skipping the meal while being fed formula through a tube.

This Thanksgiving, no one has lost an ability we take for granted.

This Thanksgiving, I know that had any of these blessings been missing, we would have still been grateful for the others that remained. It would still be a holiday. There would still be joy, celebration, moments of grace. I know that to be true as well as I know that there is no end to the blessings I can hold up and say thank you, universe. Thank you for protecting us from these things which threaten to chip away at our happiness.

Thank you, universe, for the elegance of the human body, for human life and community, for love and endurance, for a bounty of ways in which we can nourish ourselves, for those who care for our hearts, and for the ability to recognize our gifts.

This Thanksgiving, I am grateful.

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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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