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Stories of Hope: Mary

By Currents Editor posted 09-18-2018 12:31

Simona_Ferioli__MD_Headshot.jpgBrandon_Foreman_Headshot.jpgKelly_Rath__ACNP_Headshot.jpgMichael_Reznik_Headshot_2.jpgBy (from left to right) Simona Ferioli, MD; Brandon Foreman, MD; and Kelly Rath, ACNP, University of Cincinnati, Department of Neurocritical Care Section Editor: Michael Reznik, MD, Brown University, Alpert Medical School, Rhode Island Hospital

It was the Christmas season, which for Mary and Mark meant a time for reflection and making plans. Mark would retire, they agreed, while Mary would continue working her job as an operations specialist at Delta. They would continue to travel and enjoy living the American dream. And why not? Mary had just had a checkup two weeks prior and was given a clean bill of health. The plan seemed like a good one until the unthinkable happened — on the afternoon of Dec. 5, 2017, while Mary was standing in the middle of downtown Cincinnati’s Fountain Square, her heart suddenly stopped.

A Challenging Case

Downtown Cincinnati is busy in the afternoon, so when Mary went into cardiac arrest, several people witnessed it and paramedics responded almost immediately. Mary received multiple rounds of CPR by the paramedics, including two defibrillations to initially regain a pulse, but on arrival to the nearest emergency department, she again became pulseless — this time with an arrhythmia called torsades de pointes — and was again successfully resuscitated. A cardiac catheterization was performed to see if clogged coronary arteries were the cause of Mary’s cardiac arrest, but hers looked healthy enough. Her heart rate kept dropping to dangerously low levels, however, so a temporary pacemaker had to be placed. Her body was initially cooled to 33 degrees Celsius to prevent further injury to her brain after normal blood flow was restored, but even after rewarming, she still hadn’t woken up. An electroencephalogram (EEG) performed on Dec. 7 as part of routine brain monitoring revealed a possible reason why: Her brain was in a state of ongoing electrical seizures called status epilepticus, even though there were no clinical manifestations elsewhere in her body. The University of Cincinnati’s neurocritical care team was immediately contacted, and she was transferred to the Neuroscience Intensive Care Unit (NSICU) for specialized management. Kelly Rath was the nurse practitioner on call in the NSICU at the time, and her first thought on hearing the story was, “This doesn’t sound good at all.”

Mary was immediately examined when she arrived to the NSICU at UC. Her neurological examination, after all sedating medications had been stopped, showed she had intact reflex responses: her pupils constricted in response to light, she coughed when her throat was irritated and she blinked when anything came into contact with her corneas. She also had involuntary motor movements in response to physical stimulation, with reflexive flexing on one side of her body and more purposeful withdrawal on the other. But despite these relatively reassuring findings, essentially she was still in a coma. Meanwhile, her EEG continued to demonstrate spike-wave discharges at up to 4 Hz, reflecting ongoing electrical seizure activity. She was quickly treated with multiple antiseizure medications, including levetiracetam, valproic acid, and a continuous midazolam infusion that was escalated overnight in an attempt to snuff out the seizures.

The next day — now three days post-arrest — an MRI of Mary’s brain was done to aid prognostication. Though the MRI did show a few tiny strokes scattered throughout her brain, these were likely related to her cardiac catheterization and were unlikely to have a meaningful impact on her outcome. More importantly, the MRI showed that Mary’s brain might have been spared from the kind of severe damage that can be caused by the low oxygen and blood flow states during, and immediately after, a cardiac arrest. Meanwhile, a marker of brain injury called neuron specific enolase was not abnormally elevated, and her somatosensory evoked potentials, a marker of the brain’s electrical activity, were preserved — neither of which necessarily guaranteed a good outcome, but at least suggested that a good outcome was possible.

(Image above: Dr. Moshe Mizrahi interpreting a bedside EEG with Kelly Rath, ACNP)

Nonetheless, Mary’s EEG continued to pose challenges for her NSICU team. Epileptologist and neurointensivist Dr. Moshe Mizrahi realized early on these abnormal electrical discharges were SIRPIDs, meaning they were largely stimulus-induced. However, the discharges recurred when the midazolam infusion was weaned, and Mary went on to have dozens more electrical seizures that involved large parts of her brain, albeit without any accompanying clinical manifestations. Now over a week after her arrest, Mary’s status epilepticus had recurred to the point of being considered super-refractory, meaning she had failed multiple lines of treatment. Finally, though, Dr. Mizrahi and the neurocritical care team were able to get Mary’s seizures under control, but only after they arrived at a cocktail of multiple medications that included brivaracetam, clobazam, lacosamide, zonisamide and phenobarbital.

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.

Mark_and_Mary_Cooper.pngMary 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 he knows firsthand, and is probably the most important thing a family member or a care team wants to hear in the midst of a crisis.

(Image right: Mark and Mary Cooper visit the University of Cincinnati Medical 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.

(Image above: Neurocritical Care Team Members (left to right): Brandon Foreman MD, Mark & Mary Cooper, Wendi Fox RN, Simona Ferioli, MD)

(Image above: University of Cincinnati Gardner Neuroscience Institute: Neurocritical Care Team Members)

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