July 6, 2008

Nurse’s Booklet on ICU Helps Kids Cope

By Lee Hill Kavanaugh, The Kansas City Star, Mo.

Jul. 6--As a nurse, Holly O'Brien knows that fear always lurks in intensive-care units.

Loved ones speak in hushed tones. High-tech machinery bleeps and whirs, counting breaths and heartbeats and oxygen rates. Steel-cold machines are tethered to human beings whose personalities often are silenced by deep sleep and the rhythm of ventilators.

Life here is measured by numbers.

But when O'Brien learned that one of her patients, a cancer-stricken mother, was going to be visited by her 12-year-old daughter, perhaps their last time together, she wanted to help the girl and her family, somehow, some way.

The ICU might not be so scary to a child, thought the young nurse, if she knew what the machines were doing and why.

After her shift ended at the University of Kansas Hospital, O'Brien took a digital camera and photographed every "mysterious" machine used in the ICU. She zoomed in on a ventilator. The buttons on a patient's bed. The room itself. The nursing garb with gloves, face mask, lab coat. A bag of urine. Feeding tubes.

She went to Wal-Mart and printed out the photos. She called her own mom, in Stilwell, an avid scrapbook hobbyist.

They worked half the night pasting photos, choosing bright blue and orange papers, cutting borders in swirled designs, writing out explanations of the machines in easy-to-understand terms and answering common questions families ask, such as: Why does a hospital keep a patient's pee?

The homemade book about the ICU was finally ready.

But sometime during its creation for one family it became much more.

Seventh-grader Marisa Thornton of Basehor had cried and cried and cried since the cancer growing in her mom, Tina, became a monster stealing her life away.

Marisa's family had always taught her God knows everything, there's a plan and a reason why, and to have faith.

But all that felt pretty flimsy to her now. Her prayers for her mom to get better seemed to be falling on deaf ears. She hadn't seen her mom very much because she was in the hospital -- a lot.

Marisa, an only child, was staying with friends. But she had seen her dad's face when he came home from the hospital: tired and worn and sometimes puffy, as if he'd been crying, too.

Although she was just 12, she knew things were bad.

She wanted to go see her mom, even if she was in a coma, even if the hospital seemed like a place of torture instead of healing.

But each time she went there, her visits were tough. It shook the daughter to see her mom so helpless and tiny in a bed, and to see her dad and grandma standing by her, so helpless, too.

The one cheerful aspect was her mom's nurse, Holly, who seemed to care for her mom as much as Marisa did.

And for that, Marisa liked Holly a lot.

Marisa's dad, Robert Thornton, doesn't remember the exact moment when he knew his wife wasn't going to come home. He just knew.

He tried to talk with Marisa about it as best he could. But it hurt so much. And everything was happening so fast since his wife's diagnosis of stage 4 lymphoma just two months earlier, on her birthday.

He had a difficult time himself grasping it all. He knew Marisa was overwhelmed.

But O'Brien noticed them. When she cares for a patient, she cares for a family, too.

"They were a good family," she remembers. "A really loving family."

They were her inspiration.


First, O'Brien showed the homemade book to her supervisor. On the cover she titled it What's All This Stuff?, and she decorated it with a doll-like miniature doctor's coat, a paper stethoscope, a tiny miniature X-ray and some little paper beakers.

O'Brien was ready to give it to the family.

She handed it to Marisa's grandma, Agnes Moore, who usually stayed by Tina's bedside in the mornings, afternoons and evenings until Robert could arrive. Moore carefully turned its pages, marveling at the care put into it.

On the first page was a note:

"Here is a little book to help you understand some of the things that you might see while you're visiting your mom in the ICU. Feel free to ask any questions about anything you see that you are curious about."

She gave the book back to O'Brien.

"I couldn't believe that someone had gone to all that trouble," remembers Moore. She thought it would mean more to Marisa if O'Brien gave it to her herself.

That night, Marisa was speechless as she looked through the book. Slowly at first, the girl began asking O'Brien questions as the nurse changed out a bag of fluid or read one of the computer monitors.

It seemed to make things a little less scary ...


Marisa's mom, Tina Thornton, died two weeks later, in May 2006.

Two years later, the little homemade book has become a treasured keepsake in the Thornton family. Many times Marisa, now 14, has taken the book out and read through its pages again. She's told friends about it. And her father still marvels that a medical professional could care so much about his family.

The homemade book about the ICU lives on, too.

With funding from a gift from another family that spent time in the ICU, more than 3,000 copies were made using the original as a template, says Doug Peterson, the charge nurse who supervised O'Brien.

What's All This Stuff? is handed out often in the ICU, he says. Little stacks of the books are kept in every ICU waiting area in the hospital.

"Even adults seem to like it," he says.

O'Brien shrugs off any credit for the book, saying that all she wants is for the book to help other families when they have a loved one who is ill.

Marisa, now a sophomore at Basehor High School, knows the book can help. It helped her faith, made her feel like even strangers cared and made her know something else, too.

She knows for certain what she wants to be when she grows up:

A nurse, she says.

"Just like Holly."


@ Go to KansasCity.com to see the What's All This Stuff? booklet.

To reach Lee Hill Kavanaugh, call 816-234-4420 or send e-mail to [email protected]


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