Janita McLean is right. Taking a medically-fragile baby home from the hospital is scary. And overwhelming.
Taking any baby home from the hospital – even a healthy one – can be daunting. Lots of fears run through the minds of new parents: will I be able to keep the baby safe? How will I know when the baby is sick? How will I know what he or she needs? Can I do this?
For parents who take a child home with tubes and trachs and vents, those anxieties are magnified many times.
Like Janita, you may know how that feels. When Janita brought home her baby, Emily needed lots of equipment and required 24-hour-a-day care. “We weren’t familiar with how to take care of a child with a lot of medical needs, and having the trach and being on the ventilator – it was scary,” said Janita.
As you saw in the video, Emily was born with lots of problems, including a type of hernia known as omphalocele, underdeveloped lungs, scoliosis, and a small thorax. She spent her first six months in a Minneapolis hospital, a situation complicated by the fact that the family lives in northern Minnesota.
Pediatric homecare in northern Minnesota
The distance between the hospital and home was hard on the whole family, says Janita, including brother Taylor, who was five at the time and didn’t understand why mom was gone so much.
Going home was the best option for everyone. And when they were ready, there was lots of help available to help them make the transition.
Respiratory therapy at home
With education and help from health care professionals, including a PHS respiratory therapist who even spent the Fourth of July with the family making sure they were okay, Emily made a smooth transition home. And continued delivery of supplies to northern Minnesota hasn’t been a problem.
Help is available for families every step of the way, from paperwork to in-home services to responding to that emergency, middle-of-the-night call for medication.
Off the vent
Off the vent sooner than expected, Emily has made amazing progress. Her prognosis is good and her parents hope she will someday be able to stop using any oxygen.
“If you didn’t know her medical history, you would never imagine that she has gone through what she has,” says Janita. “She’s just a normal nine-year-old girl.”
Share your stories
Do you have thoughts to share about taking a sick child home from the hospital? What was your experience like? Do you have a child with respiratory or congenital problems?
We’d love to hear from you.