‘It’s like these babies are in jail’

Leena, the daughter of Alexis and Daryl Stull, was born more than nine weeks prematurely at WellSpan York Hospital on November 18, 2019. She weighed just 1 pound. She was having trouble breathing and had to be attached to a ventilator. Just as the coronavirus pandemic started, she was transferred to the Children’s Hospital of Philadelphia, where she received a tracheostomy, an opening in the neck that allowed her to move more normally while on a ventilator. That would make her stronger and learn faster, her mother said she had been told.

When Leena was finally ready to go home on June 18, another hurdle emerged. She needed 122 hours of competent home nursing every week – 18 hours on weekdays and 16 hours on weekend days. But the pandemic had exacerbated a long-standing problem for home care facilities: finding enough nurses able to care for babies who need high-tech equipment to survive.

Alexis Stull, 31, got so desperate that she started a social media campaign with Bayada Home Health Care. A post in July begged for nurses on the night shift.

“I hope none of you ever need to know what it feels like to leave your child in a hospital. Never mind, leave her in the hospital for ZERO REASON for months, just because you don’t have nurses at home, ”Stull wrote.

“We are lost. We are sad. We are defeated. We are frustrated. We don’t know what to do. We just want her to come home.”

Leena eventually went home to Chambersburg on August 18.

The problem has gotten worse since last summer, bureau and hospital leaders said. They cited competition for nurses from high-paying hospitals, nursing homes and vaccination programs. Some nurses, they said, stopped working or reduced the hours to care for their own children.

Home health care organizations are lobbying leaders in Pennsylvania to increase Medicaid home nursing payments. Current rates, they say, put agencies at a competitive disadvantage. Most children, like Leena, who need breathing equipment are covered by Medicaid.

Home nursing was “an increasing problem for several years before the pandemic,” said Meg Frizzola, a pediatric intensive care physician and chair of pediatrics at Nemours / Alfred I. du Pont Hospital for Children in Wilmington. “Now we have just reached crisis level.”

Stull said her family had 19 unfilled shifts for the month on May 1. Since someone always has to be awake for Leena, it meant many sleepless nights for Stull and her husband.

Melissa Maranto, who befriended Stull while their babies were in the hospital in York, has been looking for nurses for months, along with the hospital and local home care facilities. Her daughter, Lacey Bixler, was born at 25 weeks of gestation – 37 weeks is considered full term – on February 12, 2020, and has multiple medical issues that require 24-hour care. Maranto said Lacey had been allowed to leave, but she recently developed a new problem that will keep her at Hershey Medical Center for a while. Maranto said she only needs one nursing a day to sleep. She and her partner, Blaine Bixler, have completed their home care training, but “home nursing is practically extinct in my area,” said Maranto, who lives in Glen Rock, York County.

“I don’t understand how these babies are in the hospital,” added Maranto. “It’s almost like these babies are in prison.” She has found a nurse who can work six hours a day for maybe a few months this summer, enough to help her out with the voluntary help of a friend.

The home nursing shortage is most acute for premature babies born at 23 to 24 weeks who need ventilators, feeding tubes and other mechanical support, Frizzola said. Her hospital’s 24-bed pediatric intensive care unit usually has five or six of these babies. They often spend nearly a year in the hospital before they are stable enough to leave. Since it is difficult to find home nursing care, no one leaves when they are ready.

The hospital starts looking for nurses as soon as babies arrive, Frizzola said, and begins to search more intensively about three months before discharge. Still, babies routinely wait an extra two weeks to three months in the hospital, and the delays are increasing. A newly discharged baby had to return after scheduled nursing failed.

Emily DiTomo, CHOP’s director of public relations, said she couldn’t find anyone in the hospital to talk about this matter. A spokesman for St. Christopher’s Hospital for Children said the lack of home nursing has not delayed discharges at his hospital.

But Monica Cascarino, vice president of transitions at Penn State Health Children’s Hospital, said there is a “shortage” of home nurses willing to provide pediatric shift care, as opposed to the kind of “episodic” nurses who monitor patients after surgery. . She said kids 5 and under who need complex equipment are the hardest to place. The hospital had 19 such patients last year. They spent an additional 60 days in the hospital on average after they were ready for discharge, compared to an additional three days in 2016 and 28 in 2019. The numbers are even worse so far this year, she said. While some children have stayed for a year after their discharge date, most can find nurses within three months, she said.

Insurers often stop paying when pediatric patients no longer require hospital care, Cascarino said. Hospitals can sometimes negotiate an additional fee while waiting “to secure a safe discharge,” she said. Living facilities that specialize in kids on fans are an option, but many families want their kids at home. “Those beds aren’t readily available either,” she said.

Cascarino said the hospital estimates it could make an additional $ 564,000 a year if it could discharge complex patients more quickly and fill their beds with more lucrative patients.

The shortage of home nursing, she said, “is very frustrating on our side as well as on the family side. … It’s a pretty desperate situation. “

Revenue has long been high for long-term care and home care providers, but hiring is now more of a challenge at all levels, officials said.

Aides, who provide much of the hands-on care in facilities and homes, earn an average of $ 12.75 an hour in Pennsylvania, said Teri Henning, CEO of the Pennsylvania Homecare Association. Michael Slupecki, chief executive officer of Griswold Home Care, said sales among assistants rose to 32% in the first quarter of 2021, compared to 20% in the same period in 2020. “Everywhere you go today, there’s a sign that help is needed “. he said.

But agencies that provide both assistants and nurses said it is more difficult to recruit pediatric nurses. The shortage is so great that individual companies are now doing something unimaginable a few years ago: teaming up with competitors to fill shifts. As a result, families end up with nurses from multiple agencies, which in turn brings a series of complications.

“This is as bad as we’ve ever seen it,” said Todd Thiede, chief financial officer of Preferred Home Health Care and Nursing Services, which operates in New Jersey, Pennsylvania and Delaware.

Officials at four agencies providing pediatric nurses in Pennsylvania – Bayada, Preferred, Interim Health Care and Aveanna Healthcare – said they are turning families away for lack of nurses.

Dave Totaro, Bayada’s chief public affairs officer, said nurses are easier to hire in New Jersey, where the state private rate is $ 60 per hour for registered nurses and $ 48 for licensed practice nurses. Pennsylvania pays the same rate for all nurses – $ 45 – even though RNs have more training. The rate, which has only increased twice in 28 years, is comprehensive, so agencies must also use the money to cover benefits, protective equipment and other overhead costs.

Totaro said Bayada rejected 58% of Pennsylvania nursing requests this year because it did not have the staff. Aveanna has had to say no to 55% to 60% of his requests. Jill Peacock, vice president for clinical operations in the northeast region of Aveanna, said she knows 35 children in the Philadelphia area who are either stuck in hospital awaiting home nursing or unable to receive all the care they need at home. qualify. She said some parents are losing their jobs due to nursing issues or even moving to be closer to the nurses.

Night shifts are particularly difficult to perform, says Jim Border, deputy director of a Bayada pediatrics firm in Mechanicsburg. “The night shift nurse is really the needle in the haystack.”

Mike Zeshonski Jr., Interim’s chief of personnel and recruiting in northeastern Pennsylvania, said he could place an additional 80 to 110 nurses. Thiede said he would hire at least 200 if he could find them. That compared to last year’s 30 to 40 openings. “We have so many families in need that we can provide each of those 200 nurses 40 hours a week without blinking,” he said.

Some agencies rely on experienced nurses and will not hire new graduates. Those who do hire new nurses said they now need to spend extra weeks training new employees because students gained less hands-on experience during the pandemic.

The bureau’s leaders said it is difficult to lure nurses from hospitals where pay is higher and help is always around. Working with a sick child at home is scary. “You control everything, and you’re alone,” said Susie Ecker, director of Bayada’s transitional pediatric care program. “Not many nurses, one, have that experience, and two have the courage and confidence to go home.”

Arielle and Chris Barnes of King of Prussia are now deep in the nurse hunt. Their 5-month-old son Owen was allowed to leave CHOP on May 13, but she and the hospital have not been able to find enough nurses, Arielle Barnes said. Owen was born full term with a nasal encephalocele, a rare birth defect in which part of the brain protrudes into the nasal cavity. It hindered breathing and eating, so he needs a breathing machine and feeding tube. He will have surgery to fix the problem when he is about a year old.

Arielle Barnes had to quit her job as a store manager to take care of Owen’s twins, Emmett, at home and visit Owen in the hospital. So far Owen’s development is only slightly behind Emmett’s.

Owen requires nursing at home 24 hours a day for the first two weeks and then 16 hours a day thereafter. Arielle Barnes asked for help on Facebook a few months ago. Her post has been shared 360 times. Some nurses were willing to help, but not consistent enough to fill the schedule.

All the family can do is wait.

“We just feel a little helpless at this point,” Arielle Barnes said.

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