The most amazing things happen in Pediatric Medical Day Care
At Franciscan Hospital for Children, medical day care provides security, treatment, fun, and relief for children with special medical needs and their families.
Franciscan Hospital for Childrens Peggy Chase, RN, and her charge Amanda are exploring the wonders of childhood. (Photo by David Stone for On Call)
It is a typical summer Tuesday at the Hyman Novack Medical Day Care Program (MDCP) at Franciscan Hospital for Children (FHFC) in Brighton. A trip to the Boston Public Garden with a ride on the Swan Boats is on the schedule. So toddlers and preschoolers chatter excitedly as they load up their red backpacks with juice boxes, favorite toys, and feeding tube pumps. The nurses double check their supply of suction catheters, ventilator batteries, medications, and tube feeds. Then everyone climbs into the hospital van for a fun-filled outing.
"One of my favorite parts of working in Medical Day Care," says lead teacher Courtney Pusko, MEd, "is that these kids are totally normal. They have feeding tubes and medical problems, but they are totally okay with accepting their needs and disabilities. They throw on their backpacks full of medical equipment and go to the same places kids without medical problems enjoy."
And that, in a nutshell, is what the Medical Day Care Program is all about: Providing expert nursing care and educational enrichment to help children with complex medical conditions lead normal lives. .
Caring for medically complex children
On any given day, the Medical Day Care Program bustles with activity, laughter, and conversation. Following renovations made possible last year with the gift of a donor, it comprises a room for 10 infants, another for 10 toddlers and preschoolers, and a third private duty nursing room for 6 children who require continuous assessment and treatment. All of the children return home at the end of the day, after shuttling between the day-care rooms, outdoor playground, and hospital gymnasium.
Parents of children who have complex medical needs face myriad problems. When their child comes home from the neonatal ICU or inpatient hospitalization, they must provide direct care around the clock, coordinate multiple therapies and medical appointments, and often care for other children in the family while holding down a job. The Medical Day Care Program, which has been at FHFC since 1997, offers many clinical and personal advantages for families. Admission is open to all children, not just those who have been patients at FHFC.
Jane Scott, RN, explains that many of the children who come to Franciscan were born prematurely and have a form of failure to thrive that necessitates gastrostomy tubes and supplemental feedings. Each child is working toward a specific goal, such as becoming more accepting of food by mouth.
Once admitted to the program, children are eligible for every specialty service the hospital provides, including behavioral health. The staff coordinates visits from physical therapists, speech-language pathologists, occupational therapists, and early intervention staff from FHFC or other organizations. Parents also feel reassured by the immediate availability of emergency services in case their child has an acute problem.
Several of the children have chronic lung diseases such as asthma or were born with underdeveloped lungs. Some have tracheotomies or need oxygen or nebulizer treatments to prevent airway obstruction. Other diagnoses include seizure disorders, cerebral palsy, muscular dystrophy, kidney failure, brain injuries, cancer, cardiac conditions, and genetic diseases. The staff is proficient at managing ventilators, peritoneal dialysis, central lines, cardiac and apnea monitors, and assistive-technology communication devices.
Scott says, "Medical Day Care is a unique place to observe a child five days a week, to find out what works for them or what doesn't, or whether the problem is the same at home as at day care. It's also an opportunity to communicate constructively with the child's parents and doctor." She adds that the team is often able to find solutions that work because they are so attuned to subtle changes in the child's appearance, habits, interactions, and mood.
Years of collaborating with parents have given Scott an appreciation of the issues involved in raising a child with complex medical needs. She offers the example of a young girl with a tracheotomy whose parents also have a newborn baby. "For them to learn all the care this child requires while caring for a newborn seems incredible," says Scott. She explains that some single parents who must balance the need to support a family with the healthcare needs of a chronically ill child also struggle with lack of supports and role models. "They are totally amazing," Scott says, "and I am constantly in awe. They deserve enormous credit."
Concentrated care focuses on the whole child
Peggy Chase, RN, has a career that spans 17 years at FHFC. She came to the Private Duty Nursing Room (PDNR) to cover a colleague's leave of absence two years ago and never left. After your eye absorbs the cheerful wall mural of mother and baby pandas, zebras, and giraffes, it takes a moment to notice the range of medical equipment surrounding each crib in this room. The ratio of staff to patients in the PDNR is one to three, and Chase says the nurses perform a head-to-toe physical assessment as soon as the child arrives in the morning. This involves checking wound sites, dressings, skin integrity, neuro status, respiratory status, and bowel sounds. Chase thoughtfully works range-of-motion exercises, stimulation, and play into each treatment she delivers.
As lead teacher, Pusko creates a schedule of daily activities around themes that change weekly. Some recent examples include insects, summer games, and Native Americans and Thanksgiving. She rotates between the three rooms, running "circle time" with assistant teachers who are also certified nursing assistants. Pusko says it can be challenging to come up with ideas that are appropriate for each group of children due to their range of ages, abilities, and attention span. Each child receives a comprehensive evaluation of cognitive/motor/speech/emotional development two to four times a year, and the staff thrives on witnessing the developmental gains children achieve.
A mother's perspective
Pamela Savage shared her thoughts with On Call about the care her daughter Amanda has received at Medical Day Care for two years. Savage explains that when Amanda was four months old, she began having very severe and uncontrollable seizures. Savage says, "The day-care staff has been there since day one. They have helped me through everything." When Amanda was in and out of hospital for six months following her diagnosis, the MDCP staff held a place for her, visited her on the inpatient unit, and became skilled at managing her complicated needs. Now 2 and 1/2 years old, Amanda is a beautiful little girl with long brown curls who has just started to smile, coo, and babble at the staff and children who visit her. Savage says one little boy sings "Twinkle, Twinkle Little Star" into Amanda's hearing aid. "The kids and staff are accepting of everybody and very compassionate," Savage notes.
When Amanda developed a life-threatening infection that caused brain lesions, she faced a four-month hospitalization for an antibiotic infusion three hours a day. As an alternative, the MDCP staff learned to administer the antibiotic and provided the monitoring critical to minimizing side effects. Savage says, "They went above and beyond to keep Amanda from being in the hospital for four months." When that treatment ended and Amanda was able to rejoin circle time with the other toddlers, the children held a celebration.
Savage combines meeting her daughter's medical needs with raising teenage children and pursuing her career as a service coordinator for children with developmental disabilities. But Savage says she feels she is fortunate to have a typical life. "I drop my daughter at day care where I know she is happy with her peers, and then I go to my job. Instead of arranging all her therapies, I'm signing consents for Amanda to go on field trips!"
After describing her experience, Pamela Savage sums up the essential service that MDCP offers to families: "I have such a sense of security," she says. "I'm at work and I know Amanda is getting the very best care for her very complex medical needs. At MDCP, they do the most amazing things with the most challenging kids."
Editor's note: For more information about the Medical Day Care Program and to learn more about other educational services, visit the Franciscan Hospital for Children's website and click on "Educational Programs."
This is the first of a two part series on day care and educational services for children with special medical needs in Eastern Massachusetts. In part two, Kim Jordan describes the Radius Pediatric Center Day School in Plymouth.