Take a break, mom and dad: Children's care center helps frazzled, exhausted parents
Eight-year-old Sarah Andrews, watching cartoons from her bed where she was immobilized by a hot pink body cast, beamed and squealed in delight at the sight of her mom entering the room. Julie Andrews, lavishing affectionate praise on her "pretty girl," lowered the crib rails and crawled in to cuddle, calming their separation anxiety.
Since Sarah was discharged from the hospital following a tendon release surgery the previous week, she has been recovering at a Naperville care center called Coordinating Action for Children's Health. The transition and respite home for medically fragile children is the perfect place for Sarah, who's still battling neurological damage from a bout of meningitis in 2003, to regroup while mom gets their Downers Grove house ready.
"Our specialist was telling me about what to expect post-op," Julie Andrews said. "I'm a single mom, I have a four-level multiplex home that's not accessible, I've never changed a dressing and I don't know how to pick up a child with a cast on. I just broke down in tears in Dr. (Mary) Keen's office because I didn't know how I was going to take care of Sarah."
CoACH Care, a nonprofit that delivers short-term clinical care for kids younger than 22 with severe illnesses and conditions, offers a homey refuge for families facing health challenges. The center has gained national recognition as a model of excellence for the quality of its care administered in a comfy, cozy setting.
"I love that this place isn't sterile and institutional. There's not a white wall in sight," Andrews said. "She can stay here, and I know they'll take care of her and play with her while I'm gone. It allows me to get away and go shopping to get her some food and pajamas, and I have the time to check in with work via e-mail."
The facility, housed in an adapted wheelchair-accessible ranch, is open 24 hours a day, all year long and comes to the rescue of frazzled and exhausted parents. Through its transitional care program, CoACH provides a bridge between hospital visits and a trip home with a sojourn of up to 120 days.
"Parents need a safe environment like this where no one's judging and they have a chance to get their bearings," Executive Director Deborah Grisko said. "Our goal is to get them to the point where they feel comfortable and confident to handle what's ahead. They're learning how to tend to their child side-by-side with our staff."
At 1 month old, Sydney Peterson of Lisle was diagnosed with Congenital Central Hypoventilation Syndrome, which affects the brain's ability to command the body to breathe during sleep. Sydney, now 9 months old, was ready to go home in August. But due to a nursing shortage, the family hasn't been able to find in-home healthcare assistance.
So in late October, Sydney was transferred to CoACH Care.
"There was no reason to keep her in a hospital environment, and here people are caring for her in a non-medical way. At CoACH, she's not prodded every two hours for vitals, and they let her sleep through the night," said mother, Corey Peterson. "Plus, the nurses interact and play with her, whereas she was left to her own amusement a lot at Children's (Memorial Hospital) because it was all business for the staff."
Since the Petersons haven't been able to settle into a home routine yet, they haven't had an opportunity to familiarize themselves with their daughter's demanding healthcare regimen.
So Sydney's stay at CoACH gives them a chance to take notes and gradually accept more responsibility for her care under the supervision of pediatric pros.
"We don't know what to expect when Sydney comes home. And since she's been issued the exact equipment she'll bring with her, it's great for us to get exposure to how all of the machines work before we're more on our own," Peterson said. "We got training at Children's, but it's just different."
Each parent is required to do two overnight stays at CoACH to get a feel for nocturnal tracheostomy suctioning, ventilator checks or medication schedules in the event that the child's at-home nurse is a no-show.
Terri Miller, a registered nurse at the center, knows how overwhelming the technology can be to newbies.
"They might be dealing with feeding tubes or maybe they need to set up a ventilator, which requires special circuits, a back-up machine and a generator in the home," she said. "We give parents time to get situated and come to terms with all that. And they get a few nights' rest before they have to immerse themselves full-time."
But CoACH also offers scheduled and emergency respite relief, taking charge of the kids for up to 14 days a year for parents to deal with a death in the family, go into labor with a sibling, enjoy a vacation or just plain take a breather from the all-consuming guardianship of a child with special needs.
"It's critical for parents to get a break from those intensive demands," said Grisko, who has a son with Down Syndrome. "It's a necessity -- not a luxury."
Parents are referred to CoACH from more than two dozen hospitals around the state including Edward in Naperville, Central DuPage in Winfield, Advocate Good Samaritan in Downers Grove, Adventist Hinsdale and LaGrange Memorial and Marianjoy Rehabilitation in Wheaton.
"We are the only game in town - there's nothing else out there like CoACH for parents," said Mary Kay Caporali, director of operations.
As the first community-based children's agency in the state and the only free-standing pediatric respite center in the country, CoACH is well-regarded by those in the field.
The center has served more than 400 families since two moms of medically fragile children founded the agency in 1992. Nurses usually take on seven or eight young patients at a time. In the last year, administrators have had to turn 70 away because of space constraints in the house, Grisko said.
CoACH employs 28 people. Two pediatric nurses and two aides run the home during the day with the help of the administrative staff, and two nurses and one aide have the night shift. Physical, occupational and speech therapists work with the children. And an extensive network of community volunteers visits the center to do pet and pediatric medical massage therapy, maintain the home or simply spend time with the kids.
Three-quarters of families CoACH serves are at or below poverty level. And it costs between $750 and $900 a day to care for patients. The state reimburses the center for 73 percent of transitional care expenses, but only 22 percent of the respite care price tag. CoACH staffers raise funds to offset the difference.
According to Grisko, the center's board of directors hopes to open another location in three to five years. And there are talks of starting a third site devoted strictly to autistic children.
For more information or to sign up for special needs parenting seminars and sibling workshops, call the center at (630) 271-9155 or visit www.coachcarecenter.org.
Jessica Young can be reached at jyoung@mysuburbanlife.com
There's no place like home:
CoACH Care staffers, who trade scrubs and lab coats for street clothes, pride themselves on maintaining an intimate family feel at the center. Here's a rundown on the blueprints…
5,000-square-foot adapted ranch home nestled in a 2 1/2-acre wooded area
Five bedrooms
Barrier-free lifts mounted on the ceiling in every room
Open shower to accommodate physically handicapped kids; spa days with hair and nail sessions are scheduled for larger kids who can't shower at home
Jacuzzi
Huge castle-themed playroom stocked with toys and books for patients and visiting family members
Colorful fantasy murals painted on the walls in the hallway and bedrooms
Wall-mounted personal televisions
Stereos tuned to mellow stations playing music like Lee Ann Womack's "I Hope You Dance" and John Mayer's "Waiting on the World to Change"
Sprawling, wheelchair-accessible backyard playground and club house
Wishlist item: Assisted-technology station with touch pads and eye trackers