Throughout the ordeal, Mary’s husband Mark was a constant at her
bedside, exhausted, confused and losing hope. He wanted answers
that no one could give him, asking anyone who would listen, “will
she wake up?” and “will she be OK?” The neurocritical care team
recognized how crucial it was to earn Mark’s trust, even though, in
that moment, no one knew what the right answer was. From the
very beginning, though, the NSICU team, which grew to include
Dr. Brandon Foreman and Dr. Simona Ferioli, in addition to Dr.
Mizrahi, told Mark to hold out hope. But this hope would have to
be tempered with a realistic timeline. Dr. Ferioli, who also follows
patients with disorders of consciousness at the Drake Center, UC’s
partner facility, reminded him Mary would need time to recover,
and that this time would be measured in months.
The rest of Mary’s NSICU stay continued to have its ups and downs,
even after her seizures resolved. She developed an infection of
her gallbladder, which was successfully managed medically with
intravenous antibiotics. She remained dependent on a breathing
tube and ventilator, so she underwent a tracheostomy and
gastric tube placement. An automated implantable cardioverter
defibrillator (AICD) was placed to reduce her risk of having another
life-threatening arrhythmia in the future. Most importantly, though,
she remained in a coma, but the acute care phase of her illness was
coming to an end, and it was important for her to transition to a
place where she could be given a chance to recover. Finally, on Dec.
30, 2017, after being hospitalized for 26 days, Mary was discharged
to a long-term acute care facility, with the hope that over time she
might start to regain consciousness.
The Process of Waking Up
Just as Dr. Ferioli had predicted, Mary did start to recover — but it
was a slow process, and one that took extraordinary patience from
all those involved. It wasn’t until after Mary’s tracheostomy was
decannulated and removed in mid-January that she finally became
consciously aware of her surroundings.
“I don’t remember anything until after the tracheostomy was
removed,” she says. “I remember feeling confused wondering why
my (deceased) mother hadn’t come to visit, and I didn’t know why I
was in the hospital.” She described her first memories as feeling like
she was in the midst of an “out-of-body experience,” and that she
felt “heavily medicated.” She also distinctly recalled wanting a drink
of water, but being too weak to lift her hand to the cup, unable to
even voice her desire for a drink. She remembers her husband Mark
always being by her side, and other family members being there,
too, keeping her company and tending to her needs. But she also
became tearful as she described how lonesome she’d feel at night
after family members had left for the day.
With the help of Dr. Ferioli, Mary’s alertness and awareness of her
surroundings continued to improve as her anti-seizure medications
were slowly tapered. With time, and extensive rehabilitation, Mary’s
ability to function — in ways that she had previously taken for
granted — began to gradually improve. On Jan. 19, 2018, Mary
made it past another milestone when she was moved to the skilled
nursing portion of the rehabilitation hospital, and by Feb. 2, 2018,
she had made it home.
Fueled by Determination
Mary has remained steadfast in her desire for recovery and has made
major strides since she first made it home. Though she admits at
times experiencing intermittent confusion, word-finding difficulty
and trouble with multitasking — the latter of which in particular
has interfered with her ability to return to work — she continues to
live at home with her husband and is capable of functioning
independently in most aspects of her life. Considering it’s been only
six months post-arrest, her health and quality of life already can be
considered reasonably good by any standard — an appraisal upheld
by an objective measurement tool called the Euro-QOL, which gave
her a score of 70/100. She says she frequently practices yoga to keep
herself flexible and help manage her pain. She also practices
memory and brain enhancing games on Lumosity, a mobile app
that helps sharpen her cognition; and puts her multitasking ability
to the test by cooking dinner a couple times a week. Importantly,
Mary has also remained seizure-free, and is currently on only two
anti-seizure medications, levetiracetam and zonisamide. Her
husband Mark, who did eventually retire as planned, has stayed at
home with Mary, remaining a steady presence supporting her
throughout her journey.
Mary and Mark are both pleased with her
continued improvement, and despite what
she’s been through, Mary is reminded every
day of how grateful she is to be alive. She
says she’s learned a great deal from this
life-altering event, and as a result of her
experience urges others to try to be humble
in their lives. “Don’t be afraid to ask for help
even though it’s difficult to do so,” she says.
Mark is similarly grateful to still have Mary
in his life, and shares what he’s learned from
the ordeal: “Be patient.” And then he adds,
“Don’t give up hope on what seems like
possibly a hopeless situation” — something
Mark and Mary Cooper
he knows firsthand, and is probably the most
visit the University of
important thing a family member or a care
Cincinnati Medical
team wants to hear in the midst of a crisis.
Center in April 2018
From Patience to Hope: The Neurocritical Care Team’s Perspective
We recognize the toll that caring for critically ill patients can take on
a medical team, one that, in a different way, parallels the hardship
faced by these patients and their families during such an ordeal. But
we feel that patients like Mary, and family members like Mark, are
what make our work most rewarding, especially when they can
come back months later and show the success they’ve had in their
recovery. For us, Mary and Mark’s story has instilled hope for
patients with similarly guarded prognoses, and allows us to practice
with a renewed sense of optimism. We recognize how easy it is to
focus only on how ominous the negatives seem — a cardiac arrest,
status epilepticus, prolonged coma. But seeing patients like Mary
who go on to have good outcomes keeps us passionate about our
work, and keeps us from suffering from an excess of battle fatigue
that might otherwise interfere with our care. We hope that after
hearing her story, other providers may also allow the time and
opportunity that is so critical for patients like Mary to recover, and
to prevent a self-fulfilling prophecy from overtaking a story that
might otherwise prove hopeful.
Neurocritical Care
Team Members (left
to right): Brandon
Foreman MD, Mark &
Mary Cooper, Wendi
Fox RN, Simona
Ferioli, MD
University of Cincinnati Gardner Neuroscience Institute:
Neurocritical Care Team Members
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