Category Archives: hospital

Doctors Made Mistakes: Now What?

Please watch this, all 21 minutes of it:

This Ted Talk was produced in 2011. While Dr. Goldman was speaking eloquently and so bravely about his humanity as a physician, my daughter Sammi was in kindergarten. That is, she was in kindergarten when she wasn’t on an operating table or in the gastroenterology clinic at our local children’s hospital, being treated for eosinophilic esophagitis, a condition with which, we would learn three years later, she had been misdiagnosed.

Dr. Goldman’s talk gives me hope. My bitterness about the lost and wasted years we spent engaged in the fight against the wrong enemy has not resulted in a lawsuit, not because I am not furious and not because I am not heartbroken and not because I don’t believe we could win. We haven’t sued because Sammi’s doctors are human beings. 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 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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