When 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.
In the mid-afternoon of her second day, I joined the team of specialists who checked her when they came around to do rounds. In the hallway outside her room, they described all the medications she was getting: morphine, a diuretic, an antibiotic, an antacid, and a non-steroidal anti-inflammatory.
I stopped them there. “Sammi’s gastroenterologists always told us that patients with esophageal conditions should not take non-steroidal anti-inflammatories. Is it ok now because it’s in an IV and not touching her esophagus?”
The doctors conferred and concluded that they didn’t know the answer. They agreed to page the gastroenterologists, who were only a few floors below. It was only then that it occurred to me that we had not seen them in all the time since Sammi was admitted. These other doctors — surgical team, cardiology, and pain specialists — removed the questionable medication from her regimen until they could confirm its safety with the gastroenterology team.
That began the worst night of my experience parenting Sammi since her hospital stay as a baby when her IV infiltrated. The medication we removed pending an answer from gastroenterology — a medication called Toradol — had apparently been the key to her good pain control until then. We spent the night trying to soothe her through searing pain in the incision and the muscles surrounding the drainage tube. She suddenly seemed ancient, decades older than eight, sometimes stoically panting through waves of discomfort and sometimes crying and begging for it to end.
At one point, walking to the bathroom in the deepest part of the night — a journey of a dozen steps from her bed — she stopped a foot from the toilet and screamed like a woman in labor that she could not do it. She could not make it, she sobbed, and apologized with her eyes squeezed shut.
I knelt on the cold floor and grasped her hips. “This is not your fault,” I told her. “This hurts because it hurts, not because you’re doing anything wrong. You’re doing everything we ask. You don’t have to apologize.”
She shuffled, screeching in the back of her throat from the pain, the last foot to the toilet. The act of sitting used muscles currently being pinched by the tubing running through her chest through the thankfully-single incision, and she slapped the side of the toilet while she finally peed.
Then she looked at me and said, “I’m being punished. I MUST be being punished.”
I don’t know where my eight-year-old daughter got that idea. There has never been physical punishment for anything in our home, and we have never spoken of pain in our lives being a punishment for anything. The concept, I can only imagine, came from her utter lack of understanding of and context for what she was experiencing.
Why do we hurt? Why do bad things happen to people? Why, when we comply with instructions, do we meet with adversity anyway? This is, I believe, the way she wrestled with that question at 1am on a Saturday night in the cardiac ward of a children’s hospital. And so, kneeling on the floor of the bathroom, I conducted my own wrestling match, wondering how one answers these unspoken questions.
“You’re not being punished,” I said, my hands on her knees, a nurse standing just outside the door. “You’re unlucky. You’re having a terrible night. You’re breaking my heart, and I wish I could take this pain away. You’re not being punished. There is nothing to punish you for.”
I kept the monologue going as I wiped her bottom, eased her underwear up, and, taking care to wrap the IV lines, the pulse oximeter cord, the bag dangling from the chest drainage tube, and my own nerves over one arm, held her hand and began the journey back to bed, accompanied by her screams.
The next morning, I met the doctors in the hall on their rounds.
“Give her the non-steroidal anti-inflammatory,” I said. “No more waiting for gastroenterology.”
They did, and Sammi’s pain became more tolerable within half an hour. She never spoke of punishment again, but nearly two years later now, I hear her saying it in my heart whenever she cries. If it aged her in those moments, it aged me forever. Whose voice was that, questioning the universe?
And who will answer?