“You keep fighting, okay?” I whispered. “We’re in this together. You and me. You’re not alone. You hear me? You are not alone.”
5:38 p.m. It was the precise moment Sean Manning was born and the time each year that his mother wished him happy birthday. But just before he turned twenty-seven, their tradition collapsed. A heart attack landed his mom in the hospital and uprooted Manning from his life in New York. What followed was a testament to a...
“You keep fighting, okay?” I whispered. “We’re in this together. You and me. You’re not alone. You hear me? You are not alone.”
5:38 p.m. It was the precise moment Sean Manning was born and the time each year that his mother wished him happy birthday. But just before he turned twenty-seven, their tradition collapsed. A heart attack landed his mom in the hospital and uprooted Manning from his life in New York. What followed was a testament to a family’s indestructible bond—a life-changing odyssey that broke a boy and made a man—captured here in Manning’s indelible memoir.
“At once a son’s cry of grief and an ode to the power of familial love, told in the kind of detail that carries the reader into the story, into the hospital room, and into the heart of this brave and beautiful book.” --(Dani Shapiro, author of Devotion)
“A marvelous and heartbreaking book. Manning leads us through the minefield of his mother’s illness with grace and tenderness. This is a stunning portrait not just of his brave and loving mother but of the current American system of sickness and death. This odyssey will engross and enchant you and ultimately leave you in tears.” --(Anthony Swofford, author of Jarhead and Exit A)
H. G. Buzz Bissinger
“A beautiful portrait of hope and perseverance and the final mercy that even death can sometimes be. Tender and funny and will move the most cynical of souls.” --(H. G. “Buzz” Bissinger, author of Friday Night Lights(
I probably should’ve left early. She even told me to go. The procedure was scheduled for ten the next morning. I’d have to be back first thing. But I wanted to say it right at midnight—or, rather, since by then I knew better than to trust the unit’s clocks, at the moment Home Improvement ended and The Fresh Prince began.
I got up from the high-backed chair and went to the side of the bed. A full-on hug was out of the question; jostling the ventilator hose even the slightest bit was liable to set her off on one of those awful coughing fits. Instead, I delicately slipped my left hand behind her neck, steadied myself against the air mattress with my right, leaned down so that our noses practically touched, and smiled.
She smiled herself, mouthed her thanks, and ran a hand trembling from medication and ner vous ness about the procedure through my hair. Reaching past my temples, it was the longest I’d worn it since freshman year of college—like my love for basketball, an old proclivity renewed in the eight months since the heart attack and my return home.
I leaned closer still and was kissing her forehead when her nurse came in with the Ambien. (I forget who—being a Wednesday, officially Thursday, most likely Nick, maybe Night Christina.) Before I could step aside and gather my things to go, she clutched my arm.
However shaky, her grasp was still plenty strong. She’d quit smiling.
“Don’t say anything,” she mouthed.
I understood perfectly—she’d be bummed enough spending her birthday in the hospital without the nurses and aides and other wellwishers among the staff popping in every five minutes to remind her of the fact—and so, before finally leaving to go home and grab a little sleep, promised her I wouldn’t blab.
Except someone already had. Aunt Claire probably, or maybe it’d been deduced from her chart or wristband. For when I walked back into the room in the morning, there was tied to the nightstand a helium balloon and HAPPY BIRTHDAY! written on the dry-erase assignment board.
Both were Wendy’s doing. Of the ten or so respiratory therapists within the Cleveland Clinic’s Respiratory Special Care Unit (reSCU), she was the one I knew least. Unlike most of the RTs, whose schedules varied—a morning here, an evening there, and, with no limit on overtime, often both—Wendy worked strictly first shift, from eight to four, leaving about a half hour before I usually arrived. Still, our paths crossed enough to make an impression.
She was around Mom’s age, ruddy complected, glasses set low on her nose, heap of blond hair styled in big bangs and a ponytail. As immense as that hair was, her personality was even more so. A world-class talker—five minutes and you’d know the names, ages, and dietary restrictions of her entire family, pets and all—she would have driven Mom batty in better health. As it was, she enjoyed Wendy’s monologues. It took her mind off weaning from the vent, and, panicked as that torture justifiably made her, she always felt relieved in the presence of an RT, regardless of whom.
That morning, weaning was of no concern. It hadn’t been for a few days now, ever since she’d been placed back on full support—the reason we were finally going ahead with the G- and J-tubes.
Precisely what it sounds like, gastroparesis is the partial or complete paralysis of the stomach. Symptoms range from minor (feeling full quicker) to major (chronic nausea and vomiting). Mom’s were major. A gastric emptying test—in which she drank a gray-colored, chalkytasting barium milkshake, its progress tracked by X-ray—concluded that what would take most people two to three hours to digest took her eight to nine. She was nauseated around the clock and every six to eight hours received medication to help—Compazine or Reglan or Zofran or Phenergan. Less reliable and easy to assuage was the vomiting. She could go three days without, then suddenly throw up every ten minutes for a whole week. Then, just as suddenly, it’d stop. There was no telling why. Suctioning (a thin, vacuuming catheter slid deep into the airway to extract secretions the lungs aren’t strong enough to expel and thereby prevent pneumonia) often triggered it, but not always. Three of four different brands of tube feed were tried, but none was better tolerated than the other. The tube feed’s delivery rate didn’t matter. Twenty cc’s an hour—equivalent to four tablespoons—was thought to be safe, but sometimes even that tiny bit would come back up. Whenever it did, whenever any did, the pump would be turned off for a few hours, but that was still no guarantee. The buildup of bile was enough to get her going.
What caused the gastroparesis was no less puzzling. It could’ve been any number of things—a reaction to medication, something viral perhaps. The rest of the family and I felt sure the bypass had something to do with it, since the nausea and vomiting started shortly after, but the doctors rejected the connection. Their best guess was that the initial intubation following the heart attack or the extubation two weeks later had damaged the vagus nerve, which runs from the brain down the back of the throat and esophagus to the colon and is responsible for initializing digestion.
Pinpointing the cause would’ve done little good anyway. Gastroparesis can’t be cured. Online I’d found a few recent cases in which a newly developed stomach pacemaker had been tried with some success. But the consulting
gastrointestinal doctors claimed it was still too untested. Besides, Mom was in no state to endure such drastic surgery. Were the nausea and vomiting to be alleviated, the only viable option was a G-tube.
Short for percutaneous endoscopic gastronomy tube (also known as a PEG), a G-tube is a roughly inch-in-diameter, foot-long piece of pliant rubber sutured to the stomach. Typically used for feeding—a more permanent, more comfortable alternative to the Corpak in the nose—Mom’s was to serve the opposite purpose, draining any backed-up tube feed and bile.
That was another issue long in need of resolving: feeding. Because of the extent of the gastroparesis, eating was worthless. The only way she could get any nutrition was from the Corpak advanced through the stomach on into the jejunum, the middle portion of the small intestine.
Some Corpaks can go a couple months before beginning to clog. Hers was lucky to last half that long, on account of how much medication passed through the pinhead-wide tube over the course of a given day and how thick and sticky most of it was. (The nurses were supposed to flush the Corpak with water after every medication and finished bag of tube feed, but they didn’t always remember.) At first, the clogs were small and could be broken up with ginger ale and a little back-and-forth on the syringe. For more temperamental clogs, the Corpak was connected to a gravity bag that was filled with ginger ale, hung from the IV pole, and left to work for an hour or so before the nurses tried the syringe again. Before long the clogs would worsen and could only be undone by Clog Zapper, an industrial-strength solution that looked like spackling and came in a single-use packet with its own miniature syringe. When this failed, the Corpak would need replacing.
For Corpaks that terminate in the stomach, this can be done at the bedside; because Mom’s needed to be advanced farther and into such an exact spot, she had to travel from reSCU, located on the eighth floor of the Clinic’s G Building, down to the basement, where the X-ray department was located. Occasionally only a few days would elapse between trips, such as the time about a month before her birthday. The Corpak had just been replaced the day before. Mom was using a tissue to get a hair out of her mouth, a loose corner of tape snagged the tissue, and, when she took it away, it tugged the Corpak about a foot out of place. (Total, it was about a foot and a half long and stayed put via crosswise strips of cloth tape wound about the tube and the bridge of her nose. Because of how oily her face would get from not being able to wash, the tape would need replacing every two or three days. A bridle looped through the nostrils had been tried but was too painful.)
By then—April 27, Claire’s journal has it—there had already been talk of the G-tube; following this incident, the prospect of a J-tube was introduced as well.
No different from a G-tube—same dimensions, just positioned six inches or so lower on the surface of the belly—a J-tube is used solely for feeding, directly into the jejunum (hence its name). When the Corpak clogs, it’s simply detached and a fresh one is connected to the J-tube. Though the J-tube itself might clog, because of how short it is, it usually flushes without trouble.
While not without potential complications—namely infection—the two procedures were done endoscopically and so were relatively low-risk. The whole thing would take less than an hour. Yet standard as it all was and as much as it’d help Mom, I still had misgivings.
I hated the thought of putting in not just one but two more lines. Already there was the trach, the urine foley, the fecal tube, the peripheral IV in her hand. (Just which hand changed daily, sometimes twice a day, and sometimes it wasn’t even her hands but her feet, so routinely did the IVs infiltrate, so shot were her veins—the reason the Corpak had to be so relied on for her meds.) For a long time now, with little control over anything except what channel to keep the TV on—and not even that when it came to Everybody Loves Raymond—she’d felt like a marionette; more and more she was starting to look like one.
My concern wasn’t just cosmetic. Another line meant another port of entry, and that meant further risk of infection. Of course, it was just as dicey not to go through with the tubes, to let the vomiting persist, to run the risk of her aspirating, catching yet another pneumonia, and returning yet again to intensive care. What troubled me more was the way GI had pitched the idea. All sorts of people have them, people out on the street living totally normal, productive lives. And it’s by no means permanent—can be taken out no problem and with only a minuscule scar to show for it. This was almost verbatim how the trach had first been broached, and, considering how that had panned out so far, the necessity notwithstanding . . .
By far my biggest worry, though, was that once the tubes were in, the long-term-care talk would start up again.
The procedure required that she be completely sedated. This meant placing her on full vent support, for the day at least, possibly longer depending on how sore and fatigued the procedure left her. Lately she’d been making headway weaning. Since that remained top priority, the procedure was temporarily postponed. In the ensuing month she made her most significant progress to date, managing to stay on the trach collar a full week. Then her end tidals (the concentration of expelled carbon dioxide) soared, she was returned to full support, and the doctors went ahead and scheduled the procedure.
Exhausted from weaning, disappointed at being put back on, and nervous about the procedure, she sank into an uncharacteristically despondent mood. Aside from her demands for pain and anxiety meds, that admonition to keep my mouth shut about her birthday was the most she’d said in days. So when I walked into her room and found that balloon and note, I expected her to be livid. She was just the opposite, all smiles, couldn’t help being moved by the gesture. It also seemed to ease her fear about the procedure—enough, at least, that she was able to look past it.