Boy lives in Cincinnati hospital

CINCINNATI (AP) - Hundreds of cars, trucks and ambulances pull up the circular drive in front of Cincinnati Children's Hospital Medical Center every day.

But each morning at about 8:30, a yellow school bus rolls to a stop in the front of the massive hospital until the sliding doors open and Manny Evans, 7, glides out, heading off to another day at school.

Other students might live in suburban split levels or city Victorians, but Manny's home is the hospital, a place he's lived for the last four years. His neighborhood is the hospital's Transitional Care Center on floor A6, and he knows everyone who passes through, from the doctors to the other patients' families.

The little boy with the Transformers backpack and a Thomas the Tank Engine lunchbox is just trying to be a normal child in circumstances quite abnormal.

Hospital employees try to manage his complex medical care at the same time they play Mom and Dad by reminding him to brush his teeth, pull up his pants and get his homework done.

"We're dealing with his medical needs, and we're also dealing with the issues of trying to raise a child in a hospital," said Paul Boesch, who runs the hospital unit where Manny lives. "He has his biological mother, but he also has 60 other surrogate parents here in the hospital, the people who provide care for him, but who also provide companionship."

Manny has neurofibromatosis, a disease in which non-cancerous tumors form on different nerves. His tumors interfere with his ability to swallow and speak, to breathe and to properly digest food.

They grew with frightening speed when he was a baby. Most can't be removed surgically.

His mother, Annisha Evans, said doctors told her five times that Manny likely wouldn't live much longer because of the tumors' impact on his body.

But he proved them wrong every time.

The tumors have stopped growing, but there's no telling when they might start again. Manny's also at risk for lung infections, as well as certain cancers down the line.

Manny has a permanent tracheotomy tube implanted in his throat. It's connected to the ventilator that lets him breathe. He gets all his nutrition in liquid supplements through a feeding tube in his stomach. He also uses a wheelchair.

He lives at the hospital because managing the tracheotomy, ventilator and feeding tube takes a level of nursing care that he can't get in a home setting.

Evans tried to take care of him on her own for a month, but ended up in the hospital herself from exhaustion.

Evans made one trip after another to the emergency room when Manny was a baby. When doctors suggested Manny live at the hospital permanently, Evans reluctantly agreed.

Evans said she sees her son as often as she can, but it's difficult now with flu season restrictions in place. Restrictions mean her two other children, 9 and 1, can't come to the hospital with her, and it's often tough for the unemployed single mother to find a baby sitter.

"I felt horrible," the Walnut Hills woman said. "It's the worst feeling in the world. But at the same time, I knew everyone there had dealt with issues like Manny faces. I know they genuinely care, and they love my baby, and that made it a lot easier. But I'd still rather have my baby at home."

For now, home is a hospital room. Manny's two favorite dolls, Nikki and Toby II - Toby I disappeared a while ago, likely down a laundry chute - hang out on his bed. DVDs, books and games fill the shelves that line the walls. A photo of Manny with Reds first baseman Joey Votto hangs on one wall. Signs remind visitors to please keep the toys and games put away to keep the room neat.

In the center, an IV tree holds Manny's saline solution, feeding supplements and the monitors that track his breathing, heartbeat and other vital signs.

It's a busy room, with nurses and respiratory therapists and patient care attendants bustling in and out.

It's also an expensive room - about $3,000 a day, said Kathy Dressman, clinical director of the pulmonary business unit. Medicaid reimburses the hospital about $1,000 a day. The hospital writes off the rest.

"It's not a good situation for the state. It's not a good situation for the taxpayers, but at this point, it's the only situation we have," she said. If Manny were an adult, he'd be in a nursing home or assisted-living facility, but there isn't such a place for children in the region.

One recent evening, it was time for Manny to get a haircut.

"Now?" he protested.

"It's not going to hurt," said Denise Shanks, a registered nurse who cares for him on the night shift. She and Melinda Green used an electric shaver to trim his hair, stopping often to make sure it was even while Manny tried to sit still.

The ventilator monitor beeped, a sign something's wrong, and before a nurse could respond, Manny's hands automatically went to the tubes draped across his chest, making sure everything was properly connected.

The beeping stopped.

The ventilator is Manny's lifeline, and he can tell there's a problem with it before anything starts beeping, said Kathy Leopold, the nurse who goes to school with him every day.

"They told me at the hospital that he's always right, and he is," she said. "He knows his body so well that he can feel it immediately."

The next morning Manny was getting ready for school. He was up and dressed, but, as usual, he put off brushing his teeth.

"I think it's a control thing," said Diane Comp, one of the dayshift nurses who takes care of Manny.

Comp, Manny and Lisa Mack, another nurse, ran through the same morning checklist in play at houses all over the city, but with a twist.




Check. It was packed with a peanut butter and jelly sandwich, a pudding cup, a water bottle, an oatmeal cookie sandwich and a can of Diet Coke to clean out Manny's feeding tube.

Backup battery for the portable ventilator and emergency medical kit in case there's a problem at school?


The nurses and a respiratory therapist unhooked him from his stationary ventilator and feeding tube, then hooked up the portable ventilator he took to school.

Teeth brushed, coat on, Manny got in his wheelchair. His backpack and the bags holding the extra ventilator battery and medical kit hung on the handles. His lunchbox was in his lap.

Comp wheeled him down to the elevator. They rode to the main lobby to wait for the bus.

Leopold greeted them near the sliding glass doors at the hospital's main entrance. "Hey, buddy," she said. "I like your haircut."

While they waited for the bus, several workers greeted Manny on their way through the lobby as they started or ended their shifts.

Manny kept an eye out for the bus.

"He loves the bus ride," Leopold said. "He's always looking out the window at all the things he's never seen. Every morning, it's 'Where's my bus?"'

The 20-minute bus ride is Manny's window on the world. He sees houses, cars, trains stopped on trestles and trees, all the things that aren't visible from his hospital room.

A week or two before school started, Manny went on a test-run to make sure the bus ride would go smoothly.

He loved it, until the bus stopped. "What happened?" he asked.

"The light's red," said Becky Coffman, the child life

specialist who works with Manny every day.

"What's that mean?" he asked.

Manny doesn't take much that happens outside the hospital for granted, his caregivers said.

"It wasn't until last summer when we had a carnival for the kids on his unit that Manny walked barefoot on the grass for the first time," Dressman said. "You should have seen him. It just broke our hearts. There are so many things we take for granted that are just so foreign for these kids."

He can leave the hospital once in a while. He went home for Christmas last year, Evans said, and he's been to a Reds game. He has birthday parties at school and on the unit.

Manny's stable for now, but that could change at any moment.

"Will his disease ultimately lead to his demise? Yes, but nobody knows when," Dressman said. "His lesions could rupture tomorrow and kill him. He could stay exactly as he is and succumb to pneumonia 10 years from now. He could live to be 50 years old. Nobody really knows."

Manny acts up, like any 7-year-old. When he does, hospital employees assign timeouts or take away computer privileges or TV time.

"Once in a while, he'll take himself off the ventilator and go for a walk without telling anyone, and there are all these monitors going off everywhere," said Michele Elrod, a nurse who's known Manny since he was a baby.

Employees have to make sure they're consistent with their messages to Manny about how to behave and with discipline, said Kathy McGee, a nurse practitioner on his team.

At most family meetings, it's just Mom and Dad.

At Manny's family meetings, 30 people can be at the table, including doctors, nurses, registered dietitians, social workers, respiratory therapists, occupational therapists, medical ethicists and lawyers.

At school, Manny was just another kindergarten student in Robin Kramer's morning class at Roselawn Condon School. He and his classmates rotated around the classroom as they sounded out letters and words, flipped through storybooks and wrote sentences.

At lunch, he sat at the table and fiddled with the plastic pudding cup while the other kids ate. Manny's on a feeding tube, so he doesn't actually chew and swallow anything. But having food like the other kids helps Manny fit in better.

After his nap, Manny went to P.E. He's in a class with other special needs kids his age, but he's the only one using a wheelchair.

On this day, teacher Diana Parker and the students followed an exercise DVD.

He tapped his trach tube and told Leopold, "Window."

Manny gets two 15-minute breaks, or "windows," from his ventilator every day. It's a good sign that he can breathe on his own for that long, doctors said, but for a 7-year-old, it's a chance to be free from his wheelchair and all the tubes and wires that limit his movements.

He can walk, but the portable ventilator is too heavy for him to carry on his own, so he uses the wheelchair to get around. Once he's a little bigger, though, he'll be able to carry the ventilator in a backpack.

For the next 15 minutes, he marched in place, stretched and lunged. When time was up, he got back in his wheelchair and Leopold reconnected the ventilator.

In the afternoons, Manny's in a special education classroom where he can get more one-on-one time with the teacher.

Back at the hospital, Leopold took him to the lobby, where Comp waited for him. Her shift wouldn't end for a few more hours.

"Do you have any homework?" Comp asked.

"No," he said.

"Are you sure? Let's check your backpack when we get upstairs," she said.

Pete Polous, a patient care attendant who's one of Manny's regular team, waited there.

"I like your haircut! It makes you look older," Polous said. "Do you have any homework?"

It's a good thing he didn't have any homework, because Manny's had a big night. He and Coffman, the child life specialist, were going to make cookies.

Coffman, who works with the Josh Cares program, wasn't due for a while, though. Manny watched the clock, and the hallway, in anticipation of her arrival.

When Coffman finally arrived, she was carrying the cookie fixings. They've already tried several recipes that they can stir together in Manny's room.

"We're putting together a cookbook," Coffman said. "We need to figure out what tastes good."

Together, she and Manny stirred together flour, sugar, baking powder and peanut butter. Manny broke an egg into the mix. "What's the yellow thing?" he asked.

"That's the yolk," Coffman said. When the batter was mixed, she handed him a can of non-stick spray for the cookie pan.

So he sprayed and kept spraying until the pan was dripping.

"I think you used the whole can," Coffman said. "But the cookies won't stick."

When Coffman left to microwave the cookies, Comp told him, "You know you can go to cooking school when you get older. Culinary school, it's called."

Someone asked Manny what he wants to be when he grows up.

"A school bus driver," he said.

"Then you can tell the kids that you used to ride the bus," Comp said.

The cookies were a hit.

Manny didn't try any, but Comp and Polous each had a bite. "They're not bad," Comp said.

Soon, it was time for Manny's bath, then it was lights out.

"Good night, sweetheart," Comp said, and patted him on the head.

The room was dark, except for the green glow from the monitors.

"It's a different kind of night light," Polous said.

(Copyright 2010 by The Associated Press. All Rights Reserved.)