Unlearning the Body

chocoAfter six weeks on a fat-free diet and a week on a low-fat diet, my eight-year-old daughter Sammi was officially released from all her food restrictions by her cardiothoracic surgery team. Her chylothorax — a leak in the thoracic ducts that process fat — had completely healed.

The two of us had decided to spend the day together in downtown Chicago, starting with a visit to the Hershey Store. After all, it had been nearly two months since she’d had free rein to eat anything she wanted. I thought that surely she would gorge herself on candy while I watched gleefully.

Instead, she nibbled timidly and said, “I’m full for now.”

It was heartbreaking to realize that, as far as she’d come — years of false diagnosis with reflux, then eosinophilic esophagitis, then a revelation that her swallowing problems stemmed from a structural obstruction in her chest, culminating in major cardiac surgery — she still had more hurdles to jump. Of course we couldn’t undo eight years of her experience of eating in one day at the candy store. Why had I been so naive? Continue Reading…

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Gracias, Mil Veces: A Mother’s Day I’ll Never Forget

handheartThere were so many things to which we had to say “no” in the weeks after my 8 year old daughter, Sammi, had major cardiac surgery.

Soccer? Recess on the playground? Gym class? Wii games? No, far too much running and too many opportunities to get hit where her back was freshly stitched together.

Decent-tasting food? No, she had to be on a fat free diet to treat chylothorax.Birthday parties? No, too many off-limits foods and too many germs.

We said no — had to say no —  to almost everything she liked. It was heartbreaking. Still, there was one very wonderful, very life-affirming refuge for her: her third  grade teacher, Andrea Macksood. Continue Reading…

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Two Years Later, Fury

twoyears

In a chair for the first time after her surgery

Yesterday was the two-year anniversary of the surgery that changed Sammi’s life.

This morning, in an effort to remember a particular detail of that time, I logged into the hospital’s patient information system. I clicked aimlessly, seeing everything with the eyes of experience and after-the-fact understanding. All these test results — why didn’t I read them in detail back then when they could have done something more than remind me of how late I put my research skills to work?

The real answer is that I didn’t know how to access charts, back then. They weren’t online. They weren’t sent to us by mail. All we got was the occasional placating phone call. Oh, and a stack of bills.

Now here, in the charts, are all the comments and clues that make sense in retrospect. Like re-reading a mystery after I already know who the killer was, I am seeing the telltale signs in notes on test results and procedures: muscle visible in her esophagus, tonsils visible on a chest x-ray, no mention of her abnormal aortic arch on that first diagnostic endoscopy. The information was there for anyone to find: here is why she is always sick, here is why she cannot eat, here is why no doctor can explain her idiopathic results.

I am angry. I am furious. Continue Reading…

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The Worst Diet Yet

emptyplateWhen we brought our daughter Sammi home from her week-long stay in the hospital following cardiac surgery, we had an extra challenge to face. When we planned the surgery, we’d known that once we got her home (if we got her home), she’d need to rest. We’d expected that she’d be tired, that she’d be loopy from the medication. What we hadn’t expected was that she’d be one of the percentage of patients who undergo similar surgeries and end up with a complication called chylothorax.

Chylothorax is a long, ugly word for a leak in a thoracic duct. The thoracic ducts are part of the body’s lymphatic system, located mostly in the chest, and are responsible for — among other things — the processing of about 60% of the body’s dietary fat, which flows through them. Because the thoracic duct is located alongside the aorta, Sammi’s surgeon warned us that they might nick it with an instrument during surgery. “If that happens,” he said, “it usually heals on its own, but she might have to follow a special diet for a while.”

I barely listened. Special diet? I’d done special diets over and over again since Sammi was a baby. A diet would be no big deal. Also: it might not even happen! I did no research on chylothorax before Sammi’s surgery.

And then she had it. In clearing layers of scar tissue from the side of her esophagus, the surgeon had met with a thoracic duct, and the damage was done.

The diet, we learned, was fat-free. It didn’t mean fat-free the way that the weight-loss diets of the 80s meant “fat-free” — many of those foods, we learned, had a gram or two of fat. In a normal person with a functioning thoracic system, that’s close enough to fat-free. In someone with chylothorax, a gram of fat here and there would eventually leak out of her thoracic ducts and fill her chest with a thick, milky substance that had nowhere to go. Eventually, without more surgery, she’d drown from the inside.

Drown in fat. Continue Reading…

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What to Bring

bagIf you are ever the person I was, packing a car to drive to the hospital for your daughter’s seventeenth time under general anesthesia (this time, to move her aorta away from her esophagus), you will need to bring many things with you. Take notes. I know exactly what you will need, if you are ever the person I was.

First of all, you need clothes for you. You need soft pants and a roomy shirt to sleep in on an uncomfortable set of cushions by the window, cushions whose ill-suitedness for restful sleep you will not notice as you sink, delirious with exhaustion, in and out of a black slumber twenty times a night. You need thick socks and slip-on shoes so that you can perch on the edge of the bed and then jump off quickly to skitter across the room and grab the emesis basin, the phone, the nurse’s call button. You need more hooded sweatshirts than you would have predicted. You will be far colder than one would expect.

You do not need clothes for your daughter. Though you may have thought ahead to the incisions and the need for button-down as opposed to pull-over pajamas, you have somehow forgotten the snaking tubes and lines and leads and wires that would need to be disconnected in order to manage something as complicated as sleeves. She will only need hospital gowns. The pajama bottoms, while a nice touch, are only an impediment to quick bathroom trips, of which there will be many.

Perhaps, just bring her some socks. Continue Reading…

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