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Book helps parents deal with medical questions |
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Written by Cynthia Hubert, MCT
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Monday, 09 July 2007 |
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 Marjorie Sladek is an educated, intelligent woman.
But after her son Sean was born with a complicated medical condition, the Granite Bay, Calif., businesswoman found herself lost in a sea of jargon and confusion.
The language was unfamiliar. The doctors talked too fast. In the blur that was Sean's medical ordeal, Sladek and her husband Jim sometimes neglected to ask critical questions. Or forgot the answers.
Since that scary time nearly 16 years ago, Sladek has learned a lot about managing medical crises. With the help of a friend, she has parlayed that knowledge into a book designed to guide parents through their children's hospital ordeals.
Sladek encourages parents whose youngsters are facing a critical or chronic health problem to carry her workbook, called "Now, What Do We Do?" to doctor's offices, hospitals and therapy sessions. The book helps parents organize information, follow treatment plans and improve communication with medical specialists, she says.
It offers ideas for asking better questions and getting informed answers, and provides space for writing down questions, instructions and advice. It helps parents track medical contacts and medications. It offers tips for caring for loved ones even after they are discharged from the hospital.
The workbook is a tool, similar to those used in business endeavors, "to create a success vision," says Sladek, who is a project manager by profession.
Sladek, working with her friend, psychologist Jill Ruffman, drew her material from years of dealing with her son's illness.
Sean was born with a birth defect including a cleft palate, a jaw malformation and damage to one of his ears. He spent the first weeks of his life in an intensive care unit, and has undergone a dozen operations since then.
"My husband and I are educated people, but we weren't prepared at first to ask the right questions," Sladek says. "It was like a whole new language. We would meet the doctors and then they would walk away. We couldn't remember their names half the time, much less what we needed to ask about."
As time went on, Sladek became more efficient, writing down questions as she thought of them and taking detailed notes while discussing various options with Sean's physicians.
"Doctors always seem to be in a rush," Sladek says. "We learned that it's perfectly OK to slow them down and say, `Wait a minute. I didn't get that.'"
The information they documented came in handy during quieter moments when the Sladeks could reflect on decisions affecting their son's future.
Today, Sean is 16 years old and an honor student at Granite Bay High School. He's an Eagle Scout and a member of the student council. "He's doing great," his mother says.
Sladek and Ruffman are preparing to release a second version of their workbook, one that focuses on medical crises in adults. They are considering others that focus on specific conditions, such as cancer.
The women hope that the workbooks, which they published with their own funds, will soon be available through hospitals, social workers and insurance agencies.
"Now, What Do We Do?" is available for $19.95 at www.nowwhatdowedo.com and at Amazon.com.
For anyone facing a medical ordeal, Sladek's message is a simple one: "Write everything down, and I mean everything!" she advises. | Only registered users can write comments.
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