The hardest thing is

When I think of

Understanding the rhythms of hospitals

Why did I commit to writing 2-3 blogs a week on my FB page when “advertising” this stupid blog? Was that a sneeze? Oh my word, he sneezed.

Ian’s room is dark except for my backlit face grinning from hearing a sneeze. That almost gave me a heart attack. That’s fair. I ‘bout gave him one.

This was Ian’s first night in rehab. It was also his first overnight capping trial—his first time sleeping with his trach capped. Capping and eventually trach removal had become the center of our world, as financial help for rehab and even being placed in a neuro rehab depended on breathing without the trach.

The past nine weeks had been spent in Hendrick’s ICU, an LTAC (technically not part of Hendrick, but located in Hendrick), the ICU, and the neuro floor. Early evening of Monday, the start of week ten, he was moved to the Encompass rehab across town. Ashley followed him there while the rest of the family transported the sacks and sacks that we had accrued over two months. I would stay the night.

Although in my mind, everything happening after 10:00 p.m. happens between 2:00 and 3:00 a.m., I really don’t know when I woke to the monitor for heart rate and oxygen level beeping—a sound I had been hearing off and on since 10:40 (the minute the nurse walked out the door). I had ducked into the bathroom to put on sweats; Ian was biting the monitor off. The beeping continued on:

• The finger monitor was loose.
• The finger monitor was off, lying under his elbow (I looked at him, “Iii-aa-nn,” modulating from a low pitch to a higher one with my mother voice from his childhood—I know you did this, and if you do it again . . . .)
• The wall unit had simply stopped tracking. (Can’t even entertain the reasons for this one.)
• The finger monitor was loose.

 

Finally, he went to sleep and we drifted into another beeping pattern—his low heart rate. He slipped from 70 to 68—it beeped, then accepted. To 66—beeped, then accepted. (Maybe it actually beeped at 67, but the monitor in the rehab room faced the door, and by the time I came to from sleeping in 90-minute increments, wrestled covers to the floor, found my glasses that I’d tucked under the edge of my pillow but had somehow wiggled to the middle, and crossed the floor, 66 was what I saw.)

Ian’s heart rate monitor and I began that teasing dance again and again. The monitor read 54 when I finally cracked the bedroom door and turned on the bathroom light so I could double-check that he had been sleeping through the noise. Seeing his open eyes, I leaned over into his line of sight and asked the Mom Question: “Honey, you okay?”

His eyes became wide. Fearful. His eyebrows shot up. I leaned over further, “Honey, it’s just me, just Mom,” slipping my hood back. His expression relaxed. (Seeing my appearance in the bathroom mirror the next night in which my high, lumpy curly-hair pony tail was likely to have made my silhouette look like a cross between a medieval executioner and that crazy person in a horror movie who carries a cleaver.) He began closing his eyes.

Returning to my bed—a chair that could extend a few inches past my feet, I careened into sleep, restrained in dreams by beeping machines and plastic tubes.

I’m not sure when I finally decided to stay awake and write.  Maybe when someone had come in to measure the circumference of Ian’s thighs, a part of intake that had been overlooked. Maybe when he finally dipped to 49, initiating a different, longer beeping (or maybe I’d just dreamed that). Maybe it was actually the peg tube flush at 4:00. Not that any of those things mattered.

I stared at my blank screen, lacking words—words that I was ready to write, anyway.

Listen to him breathe. Dr. Hutchens had finally said what I had known she thought—what I think the ICU nurses had thought—that for the first three days, she hadn’t known whether Ian would live.

Listen to him breathe. To his heart rate setting off a machine. He has a heart rate. He gets extra protein in his feeding. His left leg—the leg about which movement was unsure—was bent.

Seeing a miracle

Writing

Writing is stupid. Why am I trying to do this anyway, except it’s cheaper than therapy and my mom and sister read it. I need to call my Mom today. I said that yesterday. What did I do yesterday?

Ian pierced my thoughts with cough.

Listen to him breathe.