Category Archives: hospital

12 Questions I Wish I’d Asked My Daughter’s Doctors Before Every Outpatient Procedure

notepadNo matter how many times I sent my daughter into an operating or medical procedure space, it was always unnerving. Though eventually I knew what to expect — and so did she — there was always something I forgot to ask. Sometimes, even if I thought I’d heard the answer enough times that I didn’t need to ask it again, a new anesthesiologist or nurse followed a slightly different protocol, and I’d be taken off guard. Because of that, there were questions I wish, in retrospect, that I’d had the presence of mind to ask each and every time.

If you’re taking your child in for outpatient surgery or an invasive test, here are some things you might want to ask – and write down the answers in a notebook you can keep handy. Continue Reading…

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I Am Not a Fool, and Other Thoughts

hosesAfter ten endoscopies, a year of restricted diets, nearly six years of medication to block acid production in her stomach, diagnosis with an inflammatory disorder called eosinophilic esophagitis, and dozens of trips to gastroenterologists, my eight-year-old daughter slid under an x-ray machine, drank some barium, and lit up the screen with a reveal of her esophagus, kinked into utterly unnatural shapes. After the radiologist told me in a hushed voice that the indentations in her esophagus were coming from her aorta, snaking its way across the back of her body, I began to put all the pieces together on my own.

The esophagus is like a rubber hose stretched between two funnels —  mouth on one end and stomach on the other. For Sammi, on one side of that hose —  about a third of the way from the top — a firmer hose was pressing into it from the side, trying to make its way across. That was her aorta, arching down the right side of her body instead of the left, where most people’s aortic arch lives, because of a surgery she’d had to correct a double aortic arch as a baby. It partially succeeded in crossing, but when it met with too much resistance, it snaked down further and tried again, forcing Sammi’s esophagus to follow its path until that esophagus was shaped not like a long straight rubber tube but like a lightning bolt. Continue Reading…

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Holding Things

insideSammiBetween 2010 and 2013, between the ages of four and eight, my daughter Sammi had ten endoscopies. Each time, she fasted from dinner the night before until after her morning procedure. Each time, they held a gas mask over her face in the operating room until she fell asleep, and then, after escorting me out of the room, they inserted an IV with heavier anesthesia and fluids, took a blood sample, inserted a mouthpiece and fed a camera down into her esophagus. They took pictures and they took biopsies — tiny pieces of her esophagus to test for the presence of eosinophils, the white blood cells whose functions, according to Cincinnati Children’s Hospital, include

movement to inflamed areas, trapping substances, killing cells, antiparasitic and bactericidal activity, participating in immediate allergic reactions, and modulating inflammatory responses. 

Ten times. They did that to her ten times in just over three years. They did that because she was still experiencing the symptoms of GERD — also known as “reflux” — past the age that a child would normally outgrow it. We took her to a major children’s hospital gastroenterology practice, a practice in the same hospital that had corrected her cardiac issue when she was a baby. Keeping everything in the same hospital made sense to us, at the time. All the records would be together, we thought. There would be less repeating ourselves, far fewer requirements of us to remember dates and test results — all the information would be stored with her chart.

We believed in the power of information sharing among professionals, which was a mistake. Continue Reading…

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The Telling

writershavenI am sitting in a loft in the beautiful Writers Haven, in South Haven, Michigan, overlooking Lake Michigan. For the first time since I gave up on a graduate program in creative writing, I am dedicating time just to writing. I spent money and unfathomable emotional capital to give myself two days here. It is fantastic, and it is scary.

From the outset of this blog, and long before its existence, I’ve wanted to write a book about what’s happened to my family since Sammi was born. Every child changes the family they are born into; we want that, or we wouldn’t have children. Sammi, though, brought with her such shattering and foundational changes to our dynamic and to our daily life that I absolutely can’t remember what I ever expected before she was born. What did I think our life would be? Did I even know?

Children with health issues are not news, not really. There is always a heartbreaking story to read about a child with a disease or a chronic condition. These stories tell us something about perseverance, or hope, or preventable tragedy, or miracles, or change. We know that our hearts will move with these stories, whether they are soundbytes in our social media feeds or heartbreaking book-length memoirs, and if the particular medical issue has touched our own lives, we nod knowingly, or call our family and say read this. Someone else gets it.

So, why another story about hospitals and illness, and a mother’s love? Why, after all this time away from my love of wordcraft, is this the story I want to tell? Continue Reading…

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Happy Thoughts

My daughter Sammi, for all the challenges she’s faced in her life so far, has always been able to embrace tiny moments of happiness. In part, I think it is because of a practice we started with her older sister before Sammi was even born; we call it “your happy thoughts.”

Here’s how it started: each night before bed, Sammi’s older sister Ronni would worry about bad dreams and, as a result, have trouble falling asleep, missing us even if we were just downstairs. We did not want to sit in her room until she was asleep, so we began giving her three happy thoughts to think about as she lay in bed. These were small thoughts for her small age, and they came from the day we’d just had or the day that was coming: the picture we drew on the sidewalk, the phone call with her grandparents, the plan for a zoo visit the next day. Her job was to think about those things while she waited to fall asleep.

happythoughtsWhen Sammi was born and old enough to talk before bed, we did this with her, too. “Don’t forget my happy thoughts!” both girls have reminded us if we try to leave their rooms at night without discussing them. In the last few years, we’ve asked both girls to generate their own happy thoughts, and when things have been hard for them, we’ve sent them out into the world in the morning to find their happy thoughts. Even before “daily gratitude” was in vogue, we had our happy thoughts at the end of the day. During times of intense medical drama with Sammi, my husband David and I have sometimes discussed our own happy thoughts as we lay awake at night, worrying. Continue Reading…

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