It was unfair. Beyond dealing with the emotional weight of Michael’s illness, I was asking her to carry his nuanced medical care as well. I was asking her to perform the jobs that the medical system around her was supposed to do. But no one was incentivized to care as much as Leah and she took on the challenge with enthusiasm.
We spent the next 30 minutes talking shop. She asked questions. I answered them. She took notes on her yellow sheets. We brainstormed, together.
“I want to empower you to advocate for him,” I said.
She put down her legal pad, reached out to shake my hand, and then, reconsidering for a moment, instead softly wrapped her arms around me for a long hug. She was about to head into the medical unknown.
The next time I saw Leah, she sat by her husband’s side as he lay in a hospital bed again. It was one week later. We were in the ICU. She rose from her seat when she saw me. With every visit, I swore I could see new wrinkle lines. It was as though she was in a time warp, aging a year through every week of her husband’s medical decline.
“It was like you were prescient,” I recall her saying. “I did everything you said, and it still didn’t work.”
This time, the gap was in Michael’s tube feeds. Through his feeding tube, he was meant to receive both nutritional formula and water. Water is critical to balancing electrolytes in the bloodstream; without it, the relative sodium levels in the blood can rise. The cascade of side effects increases as the sodium does: confusion, seizures, coma, death. But the second nursing facility hadn’t given Michael the right amount of water. His sodium soared and, once again, he was nearly comatose.
Leah had alerted the physician. This is completely different, she pointed out. He’s not speaking. To which she said she was told: This is just the progression of his illness. He’s a sick person, you know.
But Leah was right—though she didn’t know just how sick Michael was. She came back from running errands shortly thereafter and found Michael being loaded into an ambulance. In the emergency room, his labs showed a sodium level nearly 20 points higher than the upper limit of normal. It was infuriating. Michael was now in the ICU, less than three weeks after he was admitted and discharged and admitted and discharged again. It was preventable.
Leah’s question was potent: “How could this have happened?” At the time, I imagined many possible answers. Maybe my printed discharge summary had gotten lost. Maybe his initial nurse left it out during a verbal handoff—where the responsibility for care is transferred from one provider to another—to be forever erased from his history.
More likely, a nurse or doctor had held a handful of pages in their left hand and a handful of pages in their right, trying to re-create a medical story from scratch. And the details of his sodium management were lost in the shuffle.