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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The Sound of Water

glassofwaterMy eight-year-old daughter took a long drink of water through a straw, and I waited on the edge of a pin (on the edge of her hospital bed) to ask her a question.

As the first few drops of liquid hit her tongue, she did what she’d always done when drinking: she puffed out her cheeks like a chipmunk and held the water there. Slowly, I watched her throat as she began to swallow. Her eyes widened, and she swallowed everything in her mouth at once.

Finally, I asked. “How does swallowing feel, Sunshine?”

She set down the cup on her tray and looked at me, her hands fluttering up to her chest, trailing IVs and tubes behind her. The late afternoon light through the far window didn’t reach her bed, and so, lit by fluorescent lights above and dazed by morphine, she rested back on her pillow and answered:

“It feels so different!”

“How so?” I asked.

“When I swallow, it goes down like ssshhhhhwwwwwwww!”

“And what was it like before?”

“It was like ccchhhhk, ccchhhhk, ccchhhhk…”

With her skin still clammy and pale, only hours out of surgery, she reached again for the cup, drank another gulp, and said, “It’s so cold when it gets to my tummy.” Continue Reading…

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Punished

ivWhen my eight year old daughter Sammi went into the operating room to have an operation to unkink her oddly bent esophagus, the surgeon’s intention was to make two long incisions across from each other on her back: one to access and gently move her aorta to one side, and the other to move her esophagus itself away from its current position and sew it to her chest wall, securing its shape with stitches we would never see.

This delicate set of plans was expected to take nearly six hours to execute.

As we sat in the waiting room that day, surrounded by the useless things we’d brought with us, I couldn’t help but think about what was happening each minute Sammi was away from us. At the three hour mark, however, we were surprised to receive a report that the surgeon was closing the incision. He’d been able to complete the entire repair through one incision instead of two.

Although we were relieved — one scar instead of two! — it wasn’t until late the second night after surgery that we understood what kind of blessing that was.

About two hours after the surgeon began closing his single incision, we were allowed to join Sammi in her hospital room in the cardiac ward. We found her with her eyes half-closed, lying with her bed slightly inclined, her right finger and thumb encircling a small tube with a button on it.

I pressed my lips to her forehead, which was warm and sticky. “You did great, Sunshine,” I whispered into her hair. “Do you need anything I can get you?”

She moved her lips, and a scratchy breath came out.

Water, she mouthed. Water, please.

“Can she have water?” I asked.

The nurse said she could, and I held a cup with a straw to her lips. She swallowed, then winced and twisted her neck away. She had been intubated in surgery for hours, and her throat was raw and dry.

We sat quietly at her bedside. I ran my fingers over the bare spots on her arms while she drifted, the button-wand in her hand delivering more morphine every time she pressed it. She asked for movies which she watched for only a few moments at a time.

Somehow a day passed, and the pain seemed manageable, and then the silos of pediatric medicine began to show themselves. 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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The Second Time Is Different

Sending a baby into cardiac surgery is hard.

I brought Sammi to the hospital that morning in 2006, and she was wearing fleece pajamas covered in frogs. She was 13 months old and had a light layer of soft duck-fluff hair that stuck to my face when I cried, but she had perhaps a word or two in her vocabulary, neither appropriate for anything approaching real communication. She was beautiful and soft, and she smelled wonderful, and I could trace the shape her body made on my torso as she laid there, but had I lost her that day, far more of what I would lose of her was in the future and amorphous. Our experiences together until then were primal still — nursing and holding, touch and smell, fear and love.

It was all uncertain then: who would she be? what was she like when she was not sick? how would her voice sound when she learned to sing? 

She was a mystery, yet, and grieving a mystery is still grieving, but it’s fuzzy and intangible. I would never know quite what to miss. Continue Reading…

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