Helping a child in need with in-home respiratory support
Wanda admits her time as a parent hasn’t always been smooth sailing. When her son Ben was born, she and her husband, Jim, faced the many challenges of having a child with Down syndrome. But thanks to the professionals at PromptCare, Ben is thriving at home. And with the help of a special valve, he spoke his first words to his overjoyed parents.
“There have been some ups and downs,” said Wanda. “But the end result is great. We have our son with us, and he is growing. If it weren’t for PromptCare, Children’s Health Network, and the nurses at Unlimited Care, Inc., my son wouldn’t be home with us today.”
Ben was diagnosed with Down syndrome in utero. Despite the likelihood of cardiac irregularities in babies with the disorder, doctors determined that Ben’s heart was unaffected. He was born full-term at Northern Dutchess Hospital in Rhinebeck, N.Y. But shortly after his birth, the family’s fears were realized. Despite the previous tests, Ben had several cardiac anomalies. After a few brief moments in his mother’s arms, doctors whisked Ben away for further care.
When Ben was just four days old, he underwent his first cardiac surgery to correct a narrowing in his aorta. The next nine months were a blur of procedures. A cardiac catheterization to prepare Ben for his second surgery resulted in a collapsed lung.
His small body weakened as he faced pneumonia, and he could not be weaned off a ventilator. Through these complications, Ben was repeatedly transferred between hospitals and care centers, while his family longed to have their newborn at home. “It was a juggling act,” Wanda said. “In addition to coping with all these medical issues, we were trying to keep life normal for Matthew, our four-year-old son.”
With Ben more than an hour away, the family tried to manage. They considered making a permanent move near Ben’s hospital. Thankfully, the family found solace at Ronald McDonald House, a place that supports families dealing with a child’s medical diagnosis. The house provided a temporary “home away from home” closer to Ben, and the family stayed there for many weeks.
Wanda said the Ronald McDonald House was wonderful. “Staying locally made a big difference for us,” she said. When Ben was stable enough to have another heart surgery, the family discussed another possibility: Bringing their son home.
“PromptCare was the biggest advocate in getting the ball rolling,” said Lisa Barrett, a Field Case Manager with Children’s Health Network, which provides case management services for medically fragile children. “They played the lead role in making it possible to bring Ben home.”
The biggest challenge was securing home nurses who could manage Ben’s ventilator. When qualified nurses from Unlimited Nursing, Inc., became available, Christine Keating, B.S., RRT, PromptCare Respiratory Clinical Liaison, jumped into action.
“We asked a team of social workers, nurses, and discharge planners what could be done to get Ben home as soon as possible,” said Christine. “We began to train the family immediately, and Ben was home with his family and nursing support before the month was over.”
With Ben at home and under the watchful eye of a nurse, his parents have resumed much of their daily routine with less worry. Nighttime nurses allow the family to rest, while during the day they can be involved with Ben’s care while still focusing on Matthew and running the household. Though there is no professional care on weekends, Wanda said the nurses are flexible and will rearrange the schedule if the family needs a night out or a few hours for a family event.
During his months at home, Ben has thrived. PromptCare clinical liaisons worked to secure a Passy-Muir Valve for Ben’s ventilator. While Ben had previously made babbling sounds, the valve helped his speech become clearer. He soon spoke his first words: Da-Da and Ma-Ma.
Ben’s family is thankful to finally have their son at home while being able to meet his medical needs safely.
“I feel supported,” said Wanda. “The day Ben came home was hectic, but with all the support and direction provided by PromptCare, the transition was basically smooth. PromptCare is always there to assist us.” Ben’s father agreed. “This company lives up to its name.”
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