Ricardo Ruiz could have left the hospital two months ago. Instead, the toddler waited while his family searched for a nurse who could help care for him at home.
Ricky, as his parents call him, was born prematurely at 27 weeks with underdeveloped lungs. The 15-month-old has a tracheostomy tube in his neck connected to a ventilator that helps him breathe. He needs 24-hour-a-day, specialized care, which is why his family hoped to find an in-home nurse.
But after two months of searching without success, the Ruizes decided to take their son home and do their best, on their own.
Ricky’s parents are now caring for him in five or six-hour shifts, switching off throughout the day so his dad can go to work, and so they can take turns sleeping. Someone must be awake and watching Ricky at all times. They took classes on how to care for him and use his equipment.
“Hopefully in the next few weeks, something comes up and we can get a nurse to come in and at least cover a few hours a week,” said Ricky’s mom Margarita Ruiz, of Chicago’s Ashburn neighborhood.
The Ruizes are not the only Illinois family that’s been left in the lurch. Across the Chicago area, children with complex, chronic conditions are finding themselves stuck in hospitals longer than they should be because it’s so difficult to find in-home pediatric nurses. That, in turn, can mean fewer available hospital beds for all kids, something that became a serious problem in the fall as respiratory illnesses in children surged.
“It’s been harder for us to be able to send our patients home,” said Sue Corbet, a nurse case manager at La Rabida Children’s Hospital, where Ricky recently stayed. “I think it’s very discouraging to a lot of families, and it makes them upset because they want to have their children come home, and children do better in the home. Once they go home, they thrive.”
At La Rabida, about one-fourth of the hospital’s 27 patients are stable enough to go home but can’t because they can’t find nurses to help them once they get there, Corbet said. At Almost Home Kids, which has three locations in Illinois, 26 children spent nearly 2,600 extra days at the sites last year because of a lack of in-home nursing care, said President and Executive Director Deborah Grisko. Almost Home Kids provides transitional and respite care for children.
Other children’s hospitals in the Chicago area say they’re seeing the same thing.
“In the (neonatal intensive care units) I would say at least once a month we have kids who need a high level of skilled care and we just cannot find nursing care for them,” said Dr. Frank Belmonte, chief medical officer at Advocate Children’s Hospital.
There’s long been a lack of enough at-home, pediatric nurses, but the problem has gotten worse in recent years, health leaders say.
Part of the problem is a nationwide shortage of nurses that deepened as many nurses retired or chose new professions amid burnout from the pandemic.
Another reason it’s so difficult to find pediatric, in-home care nurses is because they have a very specialized skill set.
“Only a small percentage of the world of nursing has those skills,” said Jeffrey Emrich, owner of agency BrightStar Care North Suburban based in Northbrook.
There is also a limited number of nursing agencies that offer pediatric, in-home nurses for children on Medicaid, health leaders say. Many of the children who need at-home nursing care in Illinois are on Medicaid, a state and federally funded health insurance program, because the cost of in-home nursing would be overwhelming for most families, even those with decent incomes. Private insurance plans don’t always cover in-home nurses for as long or as much as patients may need them.
Typically, when a child in Illinois needs in-home nursing care and has equipment such as a ventilator, a feeding tube or tracheostomy tube, the family works with the Division of Specialized Care for Children at the University of Illinois Chicago to get a waiver for Medicaid to pay for shift-based, in-home nursing. The division acts on behalf of Medicaid in Illinois. Once the waiver is approved, the division gives the child’s family a list of approved nursing agencies, and the family or child’s hospital calls those agencies to try to find a nurse.
There are more than 1,000 kids in Illinois who now have such waivers and about 80 nursing agencies are approved to work with them, said Molly Hofmann, director of care coordination and systems development at the division.
That’s more agencies than in the past but still not enough to meet demand, especially as advances in medicine increasingly allow children and adults with complex medical needs to live longer, Hofmann said.
Agencies can also have a hard time finding nurses to work with Medicaid patients, given Medicaid’s relatively low reimbursement rates, said Keisha Ballard, nursing manger at agency Divine Home Care Services.
“They feel like, ‘I can go to the hospital for three days and do 12-hour shifts and make way more money than at agencies,’ ” Ballard said of nurses.
Though agencies can offer some flexibility with scheduling, they can have a hard time competing with children’s hospitals for nurses, said Emrich, of the BrightStar agency.
“Even if we could pay comparably, it’s really almost impossible for a nursing agency like ours to match the pay and benefits that someone would get for Lurie (Children’s Hospital),” Emrich said.
It’s also possible that many nurses may not think of a career in home nursing as an option, Hofmann said.
“It’s not a well known ... area for work,” Hofmann said. “These are not things that are taught to most nurses as you’re going through school. You don’t learn about the fact that there are children surviving on ventilators in their living rooms at home.”
When families can’t find in-home nurses, they’re left with what can seem like a daunting challenge.
“When you have an artificial airway, seconds can mean the difference between life and death,” Hofmann said. “It’s an awesome responsibility that’s been put on these families.”
It’s a frustrating situation for not just for families like Ricky’s, but also for children’s hospitals trying to make sure they have enough space for all kids who need care.
If a child is stable but can’t leave the hospital, that child fills a bed that can’t be given to another patient who may need it. A lack of enough beds can, in turn, back up hospital emergency departments as children wait there for beds elsewhere in the hospital.
It can also create delays transferring children between hospitals. Many of La Rabida’s patients come from other Chicago area hospitals. La Rabida focuses on rehabilitation and care for children with complex medical needs. But if one-fourth of La Rabida’s beds are filled with kids who can’t go home because of a lack of in-home nurses, those are beds that can’t go to patients waiting in other hospitals for them.
“The entire system is feeling the pressure of this,” said Brian Stahulak, senior vice president and chief nursing officer at Lurie Children’s Hospital.
That pressure came to a head in the fall, when respiratory illnesses among kids spiked in the Chicago area and across the country, sending waves of children to hospitals. The surge filled the Chicago area’s largest children’s hospitals, forcing doctors to delay some surgeries and to say no to hundreds of requests from other hospitals to transfer kids to them. During that surge, children’s hospitals needed every bed they could find.
“Because we couldn’t get patients who were ready to go home out … those beds weren’t available for patients who needed them,” Stahulak said.
Moving forward, Hofmann, with the Division of Specialized Care for Children, is hoping that recent changes and new initiatives will make it easier for some families to find in-home nurses.
For one, during the pandemic, Illinois began allowing in-home nurses working through the program to be paid overtime. Illinois also started allowing parents who are nurses to be paid by Medicaid for taking care of their children at home. Illinois recently made those pandemic-era fixes permanent, Hofmann said. In the past year, Illinois also made it easier for nursing agencies approved to work with kids on waivers in one county to work with kids in other counties as well.
Almost Home Kids is also working with the division to offer free training on ventilators, feeding tubes and tracheostomy tubes to in-home nurses.
Health leaders hope the training and recent changes will mean that fewer families have to make the type of decision Ricky’s family recently made.
On Tuesday, Ricky went home for the first time. Until Tuesday, he had spent his entire life in hospitals, first at Advocate Children’s Hospital and then at La Rabida.
His mom Margarita Ruiz is relieved to be done commuting each day to La Rabida, and hopes that it will now be easier to juggle the needs of Ricky and his 8-year-old brother. When Ricky was in the hospital, it felt like having “two lives,” Margarita Ruiz said.
She and her husband Fernando Ruiz know it will be challenging to care for Ricky without a nurse’s help. But they feel that Ricky is finally where he needs to be — with his family.
“(We wanted) to bring him home so he can actually grow with us as a family,” his mom said.
