The Story of Brian Hong

March 9, 2020 Providence News Team

 

 

Origami crane like those in Brian Hong's room. When Brian Hong was transferred from another hospital to St. Jude Medical Center’s Critical Care Unit, he was completely paralyzed, unable to speak or breath on his own, and declining. The 47-year-old father of two had a more severe case of Guillain-Barre syndrome than most clinicians see in a lifetime and with multiple organs affected, Brian's prognosis was poor.

Guillain-Barre is a rare and progressive autoimmune disorder in which the body’s immune system attacks and shuts down the nervous system, in Brian’s case, moving to every muscle group in the body—eventually reaching his diaphragm and lungs. The Amazon consumer brand sponsorships' executive had felt tingling in his hands and feet on Christmas Eve and within 36 hours was at his local hospital’s emergency department unable to walk or function. As his condition continued to deteriorate, he was transferred to St. Jude’s Critical Care Unit (CCU), recently recognized as one of the nation’s best.

A team of St. Jude specialists quickly became involved: board-certified intensivists, present 24/7 within the CCU; neurologists were brought in to monitor and address his paralysis; a nephrologist supervised plasma exchange treatments; pain management experts focused on gaining control of his debilitating and overwhelming neuropathic pain, while infectious disease specialists concentrated on his fever and severe pneumonia. Soon, highly respected rehabilitation medicine physicians and board-certified hospitalists joined the team. At any given time, five or six different specialists could be found surrounding his bed.

Brian’s best friend, Yosh, flew in from Singapore to spend nights sleeping next to his bed, while his wife Enya spent each day.

Kimberly Gonzalez, BSN, RN-BC, CCU, was one of his critical care nurses beginning the day he arrived, and despite almost 20 years of experience caring for the sickest and most fragile patients, Brian’s condition shocked her. "His body was shutting down and the fluid retention was so severe he was unrecognizable," explains Kimberly, whose credentials include certification in pain management. "He had a tracheotomy, a feeding tube, a ventilator that was breathing for him, and his only form of communication was blinking his eyes." Each letter of the alphabet would be called out and Brian would blink at the correct letter, allowing him to slowly spell out the unbearable pain he was in—and later, the relief he felt.

After a month in the CCU came a month in St. Jude’s Step-Down Unit followed by a month in the hospital’s Rehabilitation Unit, where the former workaholic underwent hundreds of hours of intensive therapy from physical, occupational, respiratory and speech therapists. Throughout it all, 1,000 origami cranes hung in his room, created by Yosh’s young daughters in Singapore—an ancient Japanese tradition to earn the makers a wish.

When he moved his fingers, there was celebrating. And the day he was able to use a speaking valve on his tracheotomy to say "thank you" to Kimberly, there were tears. Kimberly calls Brian "superman" for fighting his way back. But Brian says the credit belongs elsewhere: "Without St. Jude, I would have died. There is no doubt in my mind if I had not been transferred, I would not have survived."

Today, Brian is back at work at Amazon, as well as helping to raise his boys—performing tasks which two years ago would not have appeared on his to-do list.

"I see the value and joy in small tasks," explains Brian, who says his illness changed him in important ways. "I care about my job, but nothing at work will compare to the love of my family or the importance of my role as a husband and father."

The Cypress resident says he is humbled by the care he received at St. Jude, not just the expertise, but the compassion. "The doctors and nurses didn’t simply watch me fight, they fought with me and their emotional investment in my recovery was amazing," he says.

Brian continues to push himself a little more each day with his exercise routine. "I’m happier today," he says, "than at almost any point in my life."

To find a St. Jude physician, please call (800) 459-DOCS (3627).

 

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