Months after doctors give all-clear, parents still not allowed to bring children home from hospital

Bree Palese was starting to wonder if she would ever be able to bring her baby home.

“I’d just be sitting in the middle of the floor crying because I just miss him,” Palese said with a catch in her voice. “I just wanted our baby home.”

Her son Luca had spent his entire 7-month life in the hospital, even though doctors had been saying he was healthy enough to go home for months.

He’s not the only one.

An ABC27 investigation uncovered hundreds of babies in Pennsylvania, like Luca, separated from their families.

A Scary Start

Bree and her husband Artie are counting their blessings.

“We had actually struggled for a long time,” Palese said, “and we had a miscarriage right before we had him. So when we first got pregnant, it was just the most amazing thing in the world.”

“Luca means the light,” Palese added. “So he was our light after our storm.”

Luca was also impatient, making a big entrance at just 33 weeks.

“Maybe two pushes and he was here and immediately was whisked away to the NICU, which was hard,” Palese said, “It was really hard. I think it was about three hours before I could meet him.”

Palese knew her baby was perfect, but his health was not.

“We had to be ushered out of the room,” Palese said. “This four-pound baby, turning blue right before your eyes.”

Luca did not have a gag reflex. He had trouble swallowing and his airways were blocked. Doctors sent Luca to the Children’s Hospital of Philadelphia. A tracheostomy helped clear his airways.

Doctors told Bree and Artie their son was otherwise healthy and could go home as soon as they trained on the equipment.

“We thought, well six to eight weeks? That’s nothing. We can totally do that,” Bree Palese said.

Stuck in the Hospital

Palese says once the eight-week mark rolled around, Children’s Hospital would not discharge Luca. He needed proof of at least two weeks of 24/7 in-home nursing care because his tracheostomy requires full-time attention, even while he sleeps.

A spokesperson for Children’s Hospital declined an on-camera interview, but sources who work there say the policy is designed to protect patients due to the serious nature of their conditions, and to prevent children from winding up back in the hospital as a result of complications.

For months, six nursing agencies working together could not give Luca a full schedule of care.

“There was no one,” Palese said with a sight. “There was literally no one.”

While the Palese family worked with a caseworker to attempt to patch together a nursing schedule for Luca and fill holes on nights and weekends, Bree and Artie were driving back and forth between Dillsburg and Philadelphia, seeing their son for six hours per week. They noticed they weren’t the only ones.

“We saw so many amazing babies when we were at [Children’s Hospital,]” Palese said. “And they’re all just waiting. They’re just waiting to go home. And families waiting to love them and nurture them.”

The Root of the Problem

“It’s a widespread problem,” Bayada Home Health Care Regional Director of Pediatric Offices Barbara Sico said. “It’s more common than it’s not.

When ABC27 interviewed Sico, she said Bayada had a “pending” list of 193 children across Pennsylvania, with thousands of unfilled hours amongst the state’s home health providers.

“We need more nurses,” Sico said. “Everyone does.”

The most recent data from the Department of Health shows only seven percent of Pennsylvania’s more than 160,000 nurses are working in home health, all while demand for home health care goes up. Data from the U.S. Bureau of Labor Statistics shows a projection of 1.2 million vacancies emerging for registered nurses between 2014 and 2020.

Sico says home health agencies cannot compete with hospital pay for nursing. Medicaid reimbursement rates vary from agency to agency, but Pennsylvania Homecare Association says that rate is higher across the board for hospitals, giving them the means to offer higher salaries.

ABC27 spoke with several in-home nurses who make between $10 and $12 per hour, even though they work in a profession that requires specialized training.

“It’s not a hospital setting where she can yell down the hallway for an extra pair of hands,” Sico said. “So one minute we think we have a nurse, but then maybe she doesn’t do very well in the simulation lab training. Or she fails the test. Or she changes her mind and doesn’t want to do this assignment. So we pray every day that the prospects make it all the way and get hired and make it out to work … but it doesn’t always happen that way.”

Watch video of simulation training here:

State lawmakers recently approved a $5-per-hour increase for pediatric home nurses. It will take a few years to see what kind of effect that increase has on the recruitment of in-home nurses. Home agencies say they’re grateful, but they’re still pushing to narrow the gap between hospital and home care reimbursements.

“The higher reimbursement we request is not for us to put in our pockets,” Sico said. “It’s for us to pass along to the nurse so that we can offer them the incentive to work in home care. We can’t compete with what hospitals pay nurses because we’re just not reimbursed on the same level.”

In the meantime, babies cleared to go home continue to stay in the hospital.

Coming Home

“It’s a long-time coming,” Artie Palese said, breathing out a big sigh outside his home in Dillsburg. “My goodness. It hasn’t set in that I’m a father yet.”

Palese is surrounded by balloons, signs, and pictures of Luca. He’s pacing because he’s waiting.

Family friends who are nurses filled the last holes in the required schedule. After 210 days, Luca is coming home.

“There they are!” Artie’s mom yelled as the ambulance carrying Luca pulled in.

Watch Luca’s homecoming here:

“What’s up buddy?” Artie Palese asked as he hugged and kissed his son for the first time at home.

“Are you home?” Bree Palese smiled as she and her husband hugged and kissed Luca.

The struggle is far from over. Luca’s tracheostomy still requires constant care. But true to the nature of his name, Luca’s parents want his story to be “the light.”

“We want to make sure that the next baby that’s supposed to go home in June can go home in June,” Bree Palese said. “That’s what our kids deserve.”

 

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