Loose Ends

The pensive platform-makers at Girl Meets Voice shared a quote this week that had me nodding at the screen:

It seemed karmic, somehow, that I would read this reflection in the same week when finally, after years of thinking-about-it, I sent away the application for my daughter’s full, unabridged medical records.

The circumstances seemed a little like destiny. One morning, digging my way through several days’ worth of ignored email, I saw a message from the hospital where she’d had all of her treatments, telling me that I needed to complete additional paperwork with her signature if I wanted continued access to the abridged records they keep on their online portal. At age twelve, it seems, they want their patients’ consent for parental access. I clicked on the link to download that form and noticed, on the same page, the link to download a request for full records. Without taking much time to change my mind, I clicked that link, too, and downloaded both forms.

A year ago, I had visited the medical records department of the hospital when I was there to visit a friend’s child. Propelled by a feeling of both excitement and dread, I asked for copies of everything and was told that such a request takes weeks to process, and required the completion of a written request. At that point, dread won, and I walked away without doing anything.

Now, however, it has been more than three years since the surgery that finally liberated my daughter’s esophagus. I no longer hear her cough and wonder if she can’t breathe. I don’t have to make vacation plans around her procedures or whatever strange diet she might be on. She’s slowly, slowly gaining height and weight. The remaining signs in her of a sickly past are limited to the long scar on her back and, perhaps, to a missing inch or two in height.

In the years when we were still in the thick of it, I sat often enough in rooms with doctors that I could ask questions about what they thought and why. At first, they thought it was loose tissue in her larynx that made her breathing so loud. Then, they thought it was the extra arm of her aorta that choked her so tightly. Then, they said it was food intolerances keeping her from eating well and growing. Finally, they found the meandering artery smashing her gullet, and a surgery to move it away changed her trajectory from illness toward robust, glowing health. She seldom talks about it anymore, absent-mindedly eating a bucket of popcorn, a bowl of cherries, an overflowing bowl of pasta.

For me, though, there are a few loose ends. Sometimes I turn a corner and feel them flapping behind me when I hear a nearby baby cough. They tickle my ankles and make me lose my balance for a moment every time I watch my daughter get a vaccination or a blood draw. Mostly, though, they float into my vision when I’m paying medical bills and go to file anything in her huge, bulging folder of insurance paperwork.

They nag at me: why did this go on so long? Why did the doctors who missed her diagnosis disappear and stop returning our calls? What kind of test results went unnoticed, what kind of clues did we miss?

As I begin to flesh out the book-length version of my daughter’s medical mystery, I realize that the experiences alone are not enough. At first, they were all I could stand to share, but without a conclusion drawn from them, they amount to nothing more than a wild story for a cocktail party. After three years, I am ready to tie this package up in twine and to label it in uppercase letters. What will the label say? MISDIAGNOSIS. NEGLIGENCE. APATHY. CORPORATE MEDICINE. FATE. MALPRACTICE. UNSOLVED MYSTERY. RARE. SILOS.

I’m ready to find out.

loose-ends

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

This Could Make You Gasp

cough-syrup

What happened to me last winter could happen to thousands more people this year, and that’s not good.

I’ve never before heard a cough like the one I had this past December. It was something like the startled bark of a tiny puppy crossed with that puppy’s squeak toy. Or, it was like the highest, most urgent note of a harmonica, not blown-out but inhaled-in quickly. It was an alarming sound, and frankly, it didn’t even seem human.

At first, I thought it was just a bad respiratory infection, a common cold made more challenging by my moderate asthma. By the end of the first week, though, after three trips to the doctor in as many days, I was sure something bigger had happened to me. A chest x-ray didn’t turn up anything obvious, and so I was sent on my way with antibiotics and steroids, and I resigned myself to the couch for a full week.

The cough hardly changed at all, even on the medications the doctor prescribed. It made anyone who heard it shake their heads at me. It made me unquenchably thirsty; I drank 90 ounces of water a day, which is at least five times my normal intake of any liquid. My chest hurt. My stomach hurt. My throat hurt. The insides of my mouth hurt.

After a month, it wasn’t gone, so I went to my doctor again. By then, though the fevers were gone and my energy had improved, my voice felt precarious and ghostly, a craggy sound at best, and at worst, one I couldn’t even guarantee would come out when I opened my mouth to speak. My phone would ring, and I would open my mouth to say “hello,” only to croak out “…lo,” the first syllable lost in in my recent history somewhere, in a time when I could say what I meant.

My doctor sent me to other specialists – my asthma doctor and an ENT. My asthma doctor said she had a suspicion about what had happened and took a blood test. In the meantime, she prescribed more steroids and sent me to the ENT for a closer look at my vocal cords.

When the test came back – five weeks later, after I’d already discovered damage to my vocal cords and begun voice therapy – I wasn’t surprised. What I’d contracted in December was pertussis, also known as “whooping cough.” Continue Reading…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

They’re Not Here Anymore

sick-baby-tired-mama

It is early 2006. The woman holding the camera — a small digital camera with a flash, the only camera she has — is taking what someday will be known as a “mirror selfie,” and people will take them with their smart phones, which, in 2006, almost no one owns.

The baby in the photo is being held securely in a ring-sling, a native-style baby carrier that holds her snug against the woman’s chest. She is asleep, making a raspy, wheezing, wet sound which precludes the woman from doing the following:

  • talking on the phone
  • hearing anything on the tv
  • coping with anything but the most crucial, immediate needs
  • thinking

Continue Reading…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

Raspberries, Mushrooms, Garlic, Plums, Peace

farmers-marketFor ten summers, with varying frequency, I’ve been taking my daughters to the Saturday Farmers’ Market. In more ways than I could have ever expected, it has saved our sanity.

We began going to the Farmers’ Market as a way to preserve the parenting energy my husband and I needed. He and I made a pact after our second child was born: each of us would ensure the other got to sleep “late” (read: 8 am) one day a week. He slept “late” on Saturdays and I claimed Sundays. On Sunday mornings, he packed our squealing, chattering daughters quickly into the car — sometimes in their pajamas — to go to Home Depot, which was sometimes the only place open on Sundays. There, he handed them paint sample cards to carry and let them touch all the doorknobs while he mused over the varying bolts and power tools that just might be required for his next renovation project in our old townhouse.

On Saturdays, I took the girls to the Farmers’ Market. It opened at 7:30 am, and some Sundays, we parked our car in the tall parking garage overlooking the Market and watched as the farmers set up their stands. Had we stayed home, I would have been aggressively shushing them, desperately trying to give their father the sleep he’d earned yesterday in the dawn at Home Depot. Out of the house, I somehow discovered the reserves to be patient.

“Look,” I’d say. “Look at all the flowers in that truck!” Continue Reading…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

Broken, Brittle, Patched, Softening

babysammiShe was outside my body for only a few moments before someone was suctioning her throat. I was paralyzed on an operating table ten feet away and I could hear the sound of the suction tube interspersed with the sound of her newborn cries.

“Listen to her cry,” the midwife, at my side since the start of the c-section, said encouragingly. “That’s a solid cry. She’s strong.”

She was six weeks old when she had her first bronchoscopy, 13 months old when she went under general anesthesia for the first time, and fourteen months old the first time a doctor opened her body up and laid an expert hand on her tiny aorta.

She was four years old when she started having regular endoscopies. She was five years old when she started remembering the road to the hospital and asking me if today was a day she’d go to sleep there.

She was eight when, finally, they fixed what was wrong.

She was nine when the bullying started. Continue Reading…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather