Care at Home Takes a Village
This story is dedicated to Paul, and incredible boy who made the world a brighter place.
After needing to be intubated and tube fed at birth, Paul was diagnosed with what they consider close to be myotubular myopathy. He lived in a group home until being welcomed into Nancy’s and Morgan’s home at age 6.
Paul was on a vent 24/7, and PHS was lucky enough to be with Paul from the beginning. 
His family and health care team watched him grow into an intelligent boy who was functioning at an amazingly high level – counting, reading, doing math well above grade level, and always enjoying a good challenge.
At 11 years old, Paul lived a life that far exceeded the expectations set before him. In his life he was able to succeed and thrive – at home, with love from his family.
A Village at Home
Nancy and her partner Morgan haven’t always been versed in adjusting food pump settings, suctioning a trach or managing a vent. But with five children with medical complexities currently on PHS services, these skills have become second nature in their daily lives.
However, care takes an integrated team.
“It truly takes a village to make sure these kids are cared for,” says Nancy. “We’ve got a house, and we can provide love, but we can’t provide the medical care. The teachers, therapists, the equipment, all the little pieces that have to come together to keep these kids going – it’s truly a team.”
The Start of a PHS Journey
This family has been on PHS services since they brought Tony, now 15, home 12 years ago. Born at just 26 weeks with fetal alcohol spectrum disorder, he receives respiratory therapy and has surpassed expectations that he wouldn’t live long.
“He continues to amaze us with how much he knows,” says Nancy. “He understands much more than we previously realized. We’ve had success with the school program where we’ve been able to access some of his knowledge and use the skills he does have.”
Continuing to Break ‘Never’s
When Ian, now 11, was brought into Nancy and Morgan’s home, they were told he would never hold his head or sit up after being shaken as a baby. Today he sits, moves around, and needs a feeding tube and bolus feeds while continuing to make progress cognitively.
During a meeting with teachers at school last year, Ian was able to indicate that he wants to learn more about math, telling time, and typing. He functions incredibly with sign language and his iPad – and will undoubtedly make incredible strides in the future.
Breathing Easy
India was a shaken baby who needed g-tube feedings and dealt with weight concerns – but Nancy and Morgan jumped at the opportunity to bring her into their family.
“When we brought her home, we knew she had airway issues, but our biggest issue was her weight because she couldn’t breathe well,” remembers Nancy. “We were able to manage that thanks to the dietitians and rearranged her feedings to an appropriate weight.”
However, when she began de-stating due to her tongue occluding her airway, their pulmonologist recommended a tracheostomy and was then put on a vent at night. Now at age 9, India is a comfortable, happy little girl.
A First for Everything
“When Logan first came home, we had never taken care of a kid with a trach or vent, and it was intimidating,” Nancy and Morgan know. “But we did our vent and trach classes at PHS, and they would come out to our home and take apart a piece of equipment and have us put it together to ensure we were comfortable with it.”
A 26 week micro-preemie, Logan is hypo-glycemic and has cerebral palsy. Despite visual and hearing impairment, he has grown in a nearly 9-year-old boy who loves the sound of his voice with his Passy-Muir on, being outside, swimming, and bouncing.
The Youngest Keeps Busy
Kenedy just turned 2 and has been with Nancy and Morgan for the large majority of her life, coming to their home at 3 weeks old. Born with an incredible rare syndrome, she had extra digits on her hands and feet that were since removed, as well as a number of brain abnormalities.
Using PHS for tube feedings, Kenedy is a healthy, busy little kid who scoots around the house like any toddler. And while Nancy thinks they’re done, she can’t be sure.
“We never thought we’d adopt more than one, then we never thought we’d adopt more than two. I’m never going to say never again.”
Helping Kids Be Kids
“A frustration is people saying ‘he can’t go swimming, he’s a vented kid.’ He’s a kid first, who uses a ventilator. He can go swimming, and we’ll make it work,” says Nancy. “They’re not a medical condition, or a piece of medical equipment. They’re a kid that has to use those things to function, but first they’re kids who deserve to do things that other kids do. It takes more effort, but they deserve the chance to do it.”
Spoken by a mother who works to ensure each child has the happy life they deserve.
Originally published: April 25, 2014