Children who are medically fragile come to A Rosie Place for up to 10 nights at a time for respite stays. During this time, parents are given the gift of time. If you are seeking respite care for your medically fragile child, call A Rosie Place at 574-235-8899.
It’s important for everyone to have a break once in a while.
“We’re providing families a healthier home relationship by giving them a little break, but it’s a huge thing to them,” says Michaeleen Conlee, the administrator for A Rosie Place for Children. “The little things are huge to these families. We’re grateful and blessed that we can be a part of helping them continue to go through life.
A Rosie Place for Children is a unique, specialty hospital in Indiana, which provides respite care for medically fragile children in all 92 counties in the state.
Medically fragile children are those who require life-sustaining devices or medications in their daily care. They may require a ventilator 24/7 to help them breathe or a feeding tube to help them eat. Some children require medication, specialized treatments or therapies, and require vigilant supervision to keep them safe and healthy.
“For most kids you can rely on family members, like grandparents, to help watch them. But for families with medically fragile children, it’s more complicated,” Conlee says. “There’s more equipment and machines that can be overwhelming.”
Children can stay at A Rosie Place for up to 10 days. The extended care under the watchful eye of licensed and trained nurses and other staff allows families a chance to have a break for the intense, 24/7 care required by medically fragile children.
“It’s important to provide respite care to give families a break,” Conlee says. “There’s a significantly high divorce rate among families with medically fragile children. We serve to strengthen those family relationships and allow these kids to stay in their homes. Ultimately, that’s the goal. It’s tiring for families to care for these children 24/7, so when they have that break to come to us, that helps rejuvenate them.”
Families go through a thorough intake process, which includes documentation of each child’s healthcare needs. But it’s also about getting to know what a child likes and dislikes, and what their day-to-day life is like.
Getting to know the children makes all the difference, says Mary Bramlett, the Director of Nursing at A Rosie Place for Children.
“In a hospital setting, the delivery of medication and treatments tends to focus around the schedule of the nurses. With us, it’s just the opposite — the nurses tailor their schedules around what is normal for the family,” she says. “The key thing is that we’re not trying to interrupt what their schedule is at home. We want an easy flow when that child goes back home again.”
A TOTAL EXPERIENCE
A Rosie Place for Children is more than a hospital, though. In fact, it doesn’t look anything like a hospital. The not-for-profit was designed specifically for medically fragile children and to feel more like a home. Well, a home away from home.
The facility is made up of 6 nature-themed bedrooms, which have a feel exactly like a child’s bedroom and nothing like a hospital room. But for the most part, kids who attend A Rosie Place for Children aren’t spending time in their rooms, they’re busy running or rolling in wheelchairs down the halls, playing in the ‘family’ room or exploring the 5-acre property with staff.
“It’s not a home care setting. We’re getting the kids up and getting them out and starting that experience at the beginning of the day for them,” Bramlett says. “We have a discharge phone call after the kids go home from a stay with us, and the most common response we get from parents is that the kids are exhausted from all of the stuff we have them do — the parents are always thrilled about that!”
Bramlett and Conlee say that the organization works hard to always say “yes” to provide fun, new experiences for the children. They want them to have the same chance to experience life as any other child, even if that means staff must adapt it to make it work.
“The word ‘no’ isn’t really coming out of the mouths of our staff. From the moment these kids walk through our door, we’re trying to say yes to everything,” Conlee says. “There’s so much isolation for these kids. They’re in the hospital so often, and there are so many things they want to do that they’re told: ‘No, you can’t do that.’ We want to give them choices and make it a great experience for them.”
She says that it’s all about the sensory experience, and helping the kids feel like kids. In the winter, staff will bring snow into the building for kids to play with if it’s too cold out. If it’s too hot, they’ll create their own beach inside so they can play in the sand.
“We provide this care where these families instill a tremendous amount of trust in us. But we also provide that child an exceptional experience that they’re not going to get anywhere else,” Bramlett says. “They’re here gaining friendship with the other kids that come here. They’re having a sleepover, which may be something that would be a rare occasion for these kids. We’re just treating them like a kid and letting them be a kid.”
LOVE, CARE, AND FUN
While A Rosie Place for Children provides direct care for those children, the goal is care for the entire family.
Sometimes it’s a matter of providing a family the opportunity to go on a trip that wouldn’t otherwise be possible or, in some cases, for a parent or caretaker to take time off to recover from their own health issues.
Conlee recounts the story of a mother who had been putting off a surgery she needed for quite some time. She wasn’t from Michiana, but she worked with A Rosie Place for Children to schedule a time for her child — who was complex, medically — to stay with them so she could schedule her surgery in Indianapolis.
“She couldn’t stop thanking us for that,” Conlee says. “She was so happy she didn’t have to worry about her little one while she was having her surgery and trying to heal herself.”
It can be scary for a parent to be away from their medically fragile child for the first time. But Bramlett says it doesn’t long for families to build trust with the organization.
“You can see the fear and the hesitation at the thought of being apart from their child that first time. You get multiple phone calls throughout the day of parents checking in,” she says. “Then, you notice the trust that comes over time having their child with us. That’s the best gift for me, realizing that these families are calling less often and going away on trips, spending time with their other children, going to college visits, doing the things that many people take for granted.”
That’s what respite care is about. Providing primary caregivers with the peace of mind that their child is being cared for and giving them a short-term break to rejuvenate.
“People think about respite and they think about palliative care and that makes them think about end-of-life care. We don’t think about that. We think about that child and where they’re at at that point in time,” Conlee says. “We embrace them and do as many experiences as we can with them to make them happy and fulfilled.”
The smiles, laughter, and excited chattering of little voices echoing through the halls of A Rosie Place for Children tells the staff and families that it’s a model that works.
“You know you’ve nailed the experience when a kid’s family comes to pick them up on their discharge day and the kids look at them and run the other way because they want to stay and not go home,” Bramlett says with a laugh.