Chicagoland

Maryville helps families keep medically fragile children safe through unique care center

By Joyce Duriga | Editor
March 12, 2017

Maryville helps families keep medically fragile children safe through unique care center

Pacita, a nurse, took care of Kemiah Williams in the nursery area of Maryville’s Children’s Healthcare Center on Feb. 2. (Karen Callaway/Chicago Catholic)
A student intern from Loyola University played with a child in the nursery on Feb. 2. (Karen Callaway/Chicago Catholic)
Nurses and volunteers attended to patients at the Maryville Children's Healthcare Center, 4015 N. Oak Park Ave. on Feb. 2. (Karen Callaway/Chicago Catholic)
A student intern from Loyola University played with a child in the nursery on Feb. 2. (Karen Callaway/Chicago Catholic)
Equipment getting adjusted by a nurse at the healthcare center. (Karen Callaway/Chicago Catholic)
Equipment getting adjusted by a nurse at the healthcare center. (Karen Callaway/Chicago Catholic)
Maryville's Children's Healthcare Center. (Karen Callaway/Chicago Catholic)

Maryville Academy is well known in the Chicago area for the many years when it took care of orphaned children at its residential facility in Des Plaines. But 10 years ago, seeing the trend toward moving these children to foster care, School Sister of St. Francis Catherine Ryan, executive director of Maryville, called on staff to identify gaps in the system they could fill.

That resulted in the creation of two new cutting-edge and vital ministries — its Crisis Nursery and Children’s Healthcare Center, both located at 4015 N. Oak Park Ave.

The Children’s Healthcare Center has been open for eight years and provides transitional care to medically fragile and technology-dependent children from birth to age 21 and teaches parents how to use the technology their children need, how to fix it if it breaks and how to keep it sterile and safe.

There’s a time between when the child has to leave hospital care and before the family is equipped to take care of them at home, or the child still needs 24-hour care without a hospice, Sister Catherine said.

“We try to provide that medical care during that time and provide that support to the child and the parents,” she said. “They love their children. They want to care for them and suddenly they are faced with a child who needs 24/7 care. They are faced with the fact that they need technology to keep the child alive. They maybe are struggling on how to handle a trach or a ventilator. How in the world can they take their child home? What do they do when the buzzers go off?”

Staff are certified medical professionals. There are rooms on site where parents can stay overnight to be trained on how to take care of their child’s medical needs.

“Parents need lots of training, especially to know what happens in the middle of the night,” said Shawn Pickett, head of nursing.

The center is licensed for 12 beds and cares for about 25 new kids a year. That doesn’t count the ones that return for care after a hospital stay.

Children usually come to the center from a hospital pediatric unit. Some are born with severe health issues. Others have experienced incidents that left them disabled. Maryville also sees children and young people who were victims of gunshot wounds.

“It’s very daunting for parents to learn ICU-level care,” said Nina Aliprandi, director of family services at Maryville, which includes the healthcare center and crisis nursery.

Not all of the children have parents to care for them.

“We always have one or two kids whose families decide this is just too much to deal with at home,” Aliprandi said.

In those cases the center helps them find long-term care, or in some cases the Department for Children and Family Services gets involved and the children become wards of the state.

“So much of what Shawn and his staff do is wrapping their arms around these families and meeting their needs,” Aliprandi said. “A lot of these kids go home with eight, 10, 12, sometimes 18 hours of nursing care a day that gets administered through an agency because that’s how fragile these children are. But we all know nurses call in sick, agencies can’t replace nursing staff so it’s a balance between the social and emotional support we give families.”

Each case is different. They also teach others who live at home with the child how to use and maintain the equipment.

“For example if there’s a little brother or a sister, Shawn’s staff, in a non-threatening and a non-scary way, has to teach the little brothers and sisters why you don’t pull out the trach[eostomy] and things like that. They really do a global assessment of the family and caregivers and support team for that child,” she said.

In the adult world there are rehabilitation services that cover this gap. Those don’t exist for children. Maryville’s Children’s Healthcare Center is only one of two places like this in Cook County.

Before the center, the children were staying in the hospital after they were ready to be released because their homes weren’t prepared. If they went home and something happened, the parents would rush them to the local emergency room. However, because the children have such complicated issues, the local hospitals would send them to where their specialist was.

Aliprandi knows how it works because she has a child who needs specialized care like this.

“For the staff to prepare these families to safely care for the kids at home and minimize rehosptializations if they are unnecessary is a big task. And when you have a child like we [my family] have, and you wind up at one of those local hospitals you’re there for six hours while they are sorting everything out even though they know they are going to end up sending you back to Lurie or Comers or wherever,” she said. “You’re going through that — whether the parent or the caregiver for the child — you’re exhausted.”

For those who come to the center the rate of return to the hospital decreases.

“We do an excellent job of keeping kids out of hospitals,” said Pickett. “Nationwide the average return to hospital after 30 days is 20 percent. We have a 1 percent return. That’s how successful we are.”

The center also provides respite care for parents for up to two weeks.

“Once a child is home and the parents are well-trained it’s daunting. They need a break. Maybe they want to go on vacation or maybe they are just exhausted. They can bring the child here for 14 days and say, ‘I just need a break.’” Pickett said.

José Loza’s 18-year-old foster daughter Maria was born with cerebral palsy and is bedridden. She’s staying at the center until Loza can find care for her.

“They take good care of my baby,” said Loza. “It’s a different environment. It’s not like at the hospital. It’s like a home.”

Since the center is staffed 24 hours, Loza can come anytime to visit his daughter. “If I decide in the middle of the night that I want to visit my baby, I come.”

Loza is a truck driver and lives about 40 miles away from the center. His daughter came to the center last August. She’s been in several hospitals because of the level of care she needs.

“The reason I have her here is the state doesn’t offer me the care she needs,” Loza said. “The doctor says she needs 24-hour care. I’m not a professional.”

In the next issue we will profile Maryville’s Crisis Nursery. For information about Maryville’s programs, visit www.maryvilleacademy.org.

Topics:

  • maryville
  • healthcare
  • des plaines

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