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Respite House Provides a Break for Parents of Medically Fragile Children

Monday May 15, 2000
Cindy Fischer, RN, shares a laugh with 16-year-old John, a recent visitor to Respite House. Photo by Andrew Campbell.
Cindy Fischer, RN, shares a laugh with 16-year-old John, a recent visitor to Respite House. Photo by Andrew Campbell.
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Mary Kish and her husband had dreamed of going on a cruise. But when her husband actually won such a prize, they knew in reality that they could not leave their daughter Michelle, who has a rare craniofacial disorder called Hallerman-Streiff syndrome. The syndrome causes skull and facial anomalies and dwarfism. She is mentally unimpaired, but requires a ventilator for 20 to 24 hours a day, as well as tube feedings, and walks with a walker. No one could assume full responsibility of her care if they went on a vacation, and admitting her to a hospital was not a possibility.
What Michelle's parents didn't know, until informed by some of their home care nursing staff, is that a place called Respite House had opened in Naperville, IL, last October to provide just such an opportunity for parents caring for medically fragile children.
"Sometimes families simply want a weekend away, or maybe just to sleep in a couple of mornings, or to be able to watch a video all the way through without interruptions," says Denise Callarman, cofounder of Respite House, along with partner Leann Lazzari.
Each woman knows all too well that weekends off are only dreams to families like the Kishs. Callarman and Lazzari, both mothers of medically fragile children with technology-dependent needs, designed Respite House as a place where parents can be temporarily (from one night to two weeks) relieved of the unending stress of caring for their children's medical needs.
Families of chronically ill children are under incredible stress. With nursing staff coming and going, delivery people filling rooms and closets with supplies and equipment, and the care of other children still needing to be attended to, these families' lives are a routine of commotion. To anyone else, it would appear to be chaos. But even organized chaos needs a change of pace.
"Respite House is a place where families go to recharge their batteries, to regroup and refresh so they can start anew caring for their child when they return home," says staff nurse Cindy Fischer, RN, a 15-year-veteran of working with children who have special needs.
Respite House serves children from newborns to 18-year-olds. A two-week maximum stay is permitted, with a minimum of one overnight stay required - enough time for dinner and a movie if that's all parents want.
Respite House is a 4,000-square-foot ranch home on a beautifully landscaped two-and one-half-acre lot in southwest suburban Naperville. It has 10 beds, a playroom, a family room with a fireplace, children's and families' resource libraries, and an outdoor pavilion. The rooms were decorated by Lazzari in bright, pleasing colors and murals that include clouds and stars. "We were families that experienced the same as these families; that is why we designed it as we did," says Lazzari.
Full electrical support is available to handle medical equipment, such as ventilators and suction machines. A backup generator is available as an emergency power source.
The facility is staffed by a skilled team of RNs, LPNs, and CNAs experienced in pediatric home care who are contracted through Merit Healthcare in Lombard, IL.
Since Respite House is licensed by the Illinois Department of Public Health, services are comparable to other licensed skilled-care facilities in the state and, as such, meet similar regulations as other skilled-care facilities. Such licensing further lends credibility when marketing Respite House's transitional care services to hospitals. Several payment options are accepted, including private pay, insurance, and public assistance through state funding.
Respite House does not admit children based on their medical diagnoses, typical of traditional care centers, says Marilyn Berg, RN, MSN, Respite House's nursing administrator. Rather, a child is admitted based on nursing care needs. "We care for children with tube feedings or tracheostomies that need frequent suctioning or other respiratory support," she says. "We admit any child who is emotionally stable and needs to be closely monitored because they have a medical device that is taking the place of a normal body function, such as a shunt, trach, or ventilator. "Each child's plan of care is authorized by the primary care physician before admission, and the child's routine is followed as closely as possible."
Before admission, a family must have the medical equipment and supplies, such as a feeding pump, diapers, suction machine, nebulizer treatments, urinary catheters, ambu bag, and anything else needed for the stay, delivered to Respite House.
While the hour-by-hour nursing care is vital, other routines and adjunctive therapies, such as speech therapy, are consciously not followed. The idea is that the child needs the break or vacation from daily routines as well. Callarman and Lazzari are most proud of Respite House's family-directed service, in which families direct the program for their children's care. "Parents know exactly what their [medically fragile] child needs," says Callarman, who this month received the DuPage YWCA outstanding women leader 2000 award in healthcare.
The mere opening of Respite House is a tribute to Callarman's and Lazzari's tenaciousness and passion in their belief that the parents of chronically ill children desperately need respite care. They were challenged by numerous roadblocks that threatened to derail their goal. But nine years later, after outlasting numerous naysayers, weeding through myriad state regulations and approval processes, and raising a million dollars, Respite House opened for business to accolades from health professionals who work with chronically ill children and their families, and from the families and children who are most in need of respite care themselves.
The Kishs went on their nine-day cruise while Michelle stayed at Respite House. Says Kish, "We had a great time and she had a ball. It was a godsend."
For more information or to volunteer call (630) 960 -2467.