October 2, 2017: Easier Said

If October 1, 2017 had been entirely reactive, then October 2, 2017 was entirely proactive. Or I hoped it would be entirely proactive when I arrived at the hospital ready to get some answers. My goal was simply to understand what was happening with Matt, make sense of the discrepancy between the positive MRIs and the deterioration I was witnessing. Why did he fall?

The day before when the ambulance had asked me to choose between hospitals, I chose the small, local hospital rather than the sprawling, busier hospital. This seemed, at the time, to be the better option for stitches and, possibly, another CT scan. It also made it easier for me to send the kids off to school and get to Matt’s side without fighting rush hour traffic.

I arrived at the hospital and learned he would not be discharged. The neurologist did not believe a seizure had caused Matt’s fall.  The neurologist wanted to keep Matt one more night to investigate the unexplainable drops in his heart rate they’d noticed while he’d been hooked up to machines. The assumption was that a tumor or swelling in the brain was causing the dips in heart rate, but the hospital ordered a full cardiology workup, to be safe.

His heart was fine. His lungs were fine. His brain scans looked unchanged from the scans taken just two weeks earlier. I should have been relieved, but I was only terrified. Logically, if all the tests were showing Matt was fine, he shouldn’t be getting worse.

When the tests came back and showed no sign of trouble, it seemed as if the doctors became too willing to accept the fact that there was no answer. They seemed too ready to send Matt home again. I knew if Matt was sent home, we’d be back within a week. Until we understood what was happening, we’d be trapped in a revolving door of ambulances and discharge papers.

I wanted Matt home—with the kids, back to himself—but I also wanted him safe. More than that, I wanted an explanation. And a resolution.

Truly, I just wanted poliovirus to do what it was supposed to do. Those high expectations.

I didn’t hear from Duke until later in the afternoon—though the doctors had spoken around noon. Duke didn’t seem worried about the thyroid nodule or the sclerotic lesions. They didn’t seem concerned about the fall or the heart rate drops. Or, if they were worried, they weren’t quick to make a plan for further investigation. Duke suggested an increase in the dose of anti-seizure medicine Matt was receiving and told us to hold tight until they saw us in person. Easier said than done.

Matt slept most of this day, though he woke to work with the in-patient physical therapist who noticed the way Matt’s right foot dragged, the way he swayed, off-balance, as he stood still. Most of the day I sat in his room and watched his heart rate dip and jump as I listened to an audiobook. I Googled and added thyroid nodule and sclerotic lesions to my search terms. No story or study came close to Matt’s story and that was the most frightening result I could have imagined.

That night, G and H couldn’t fall asleep. That night was the first night H started sleeping with his door open. That night would be the last Matt spent at the small, local hospital.

This story has reached another downswing, obviously. The story of tomorrow has replayed in my mind too often. But, an upswing will come. There will be an explanation for Matt’s deterioration—though it will take another week to find it—and I am endlessly grateful for the resident (a neurologist-in-training) who took the time to look at Matt’s scans—truly, truly look at his images—and question what so many other doctors had overlooked. She saved him. She gave us our next upswing. When I was so close to forgetting, she reminded us that we still had reasons to hope.

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