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开 本: 32开纸 张: 胶版纸包 装: 平装是否套装: 否国际标准书号ISBN: 9780307463241
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.
Sean Manning brings a delicate touch to the heaviest details
of loss and grief: the late-night drives, the waiting-room
magazines, the loneliness, the community. His story of his mother’s
life and death manages to be both honest and inspirational–not to
mention incredibly moving.
-Rob Sheffield, author of Love is a Mix Tape
”The Things That Need Doing is 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
“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 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
C H A P T E R O N E
I.
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.
“Happy birthday.”
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’…
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