The lonely path from hospital to home

At 9:45 p.m. on Tuesday, April 26, 2011, the phone rang in our home in suburban Philadelphia. It was a colleague of my husband, Eric, who was on a business trip in Chicago.

Eric, he told me, wouldn’t be flying home that evening.

More health and science news

Push is on to promote health law

Sandhya Somashekhar

A coalition with ties to the White House launched a multimillion-dollar effort to sign up the uninsured.

White House, NASA want help hunting asteroids

Joel Achenbach

On Tuesday, they will announce a “Grand Challenge” to find killer space rocks.

Susan G. Komen names CEO to replace founder Nancy Brinker

Lena H. Sun

After the Planned Parenthood funding controversy, Komen chooses health policy leader Judith Salerno.

Had he missed the plane? I asked. Not exactly, he answered. Eric was in the emergency department of a community hospital near O’Hare. He had collapsed while boarding his flight.

Eric, who was 53 and formerly healthy, had suffered a brain-stem stroke that had caused Wallenberg’s syndrome: The stroke had blocked an artery on the right side of his neck, depriving part of his brain of the blood it needed.

Eric was far from home, hospitalized with a serious stroke. My thoughts were racing. Thank goodness he wasn’t alone, thank goodness the stroke happened before the plane took off, thank goodness I’m a registered nurse with lots of friends and resources, I told myself.

In an instant, my family was thrown into the world of medical “care coordination” and “transition management.” From the moment Eric fell ill, the goal was to get him hospitalized in Philadelphia — and, of course, eventually home and well again. But when this saga began, I had no idea how large the obstacles to reaching that goal would be — or how wide the gaps in his care would be along the way.

My new life begins

I arrived at Eric’s bedside at 11:30 a.m. on April 27. Although I’d been able to secure a bed for him in the neurologic intensive care unit at a Chicago academic health center, it took me until 5:30 p.m. to get him into a hired ambulance for the trip from the community hospital.

Eric spent 10 days hospitalized in Chicago. He couldn’t swallow, and he couldn’t walk. He had rapid, involuntary eye movements, called rotary nystagmus, that made him look like a cartoon character with his eyeballs going round and round in circles. He also had a drooping right eyelid, pupils that were different sizes, double vision, numbness on the right side of his face and in his left arm and leg, and other neurologic issues.

As his wife, I wanted to cry. Instead, I put on a brave face and became his care manager.

And then there was one

During Eric’s hospitalization, he was cared for by a team of more than 50 health-care professionals and students. He was asked to repeat his story over and over, and although information was passed along from shift to shift, inaccuracies inevitably cropped up, as in the whispered game of telephone. It was up to him — with my help — to correct them. (Eric was able to speak, but his voice was very hoarse.)

Getting Eric from the neurologic intensive care unit to step-down care and then to general care was relatively smooth. But when he was finally well enough to transfer to an acute rehabilitation hospital in Philadelphia, things got a lot more difficult. There was no communication about the handoff between the two facilities. I don’t know why, given that such situations are hardly unique. But everything was left to us, the ill patient and his wife. Basically Eric was going from a group of 50 caregivers to one — me.