Home care for micro-preemies

Willow Wilson learned early on that life is worth fighting for.

Born to Pam and Rick Wilson of Cottage Grove at the tender age of 23 weeks and five days, Willow was one of the smallest surviving babies ever born at Children’s Hospitals and Clinics of Minnesota. Babies born this early, known as micro-preemies, have less than a 20 percent chance of living.a

Pam had experienced an amniotic sac rupture that so distressed her baby; an immediate Caesarian delivery was the only choice. With a birth weight of only one pound plus a half-ounce, Rick Wilson discovered could cradle his newborn daughter in just one hand.

In previous years, such premature babies would have remained in the hospital for long durations or not survived. Today, a wide array of newborn and childhood medical conditions are being successfully managed at home by pediatric home care professionals.

Not just for grownups

Most people associate home care with seniors, but truly, home care serves people of all ages who are recovering from myriad health challenges, including those as new to life as Willow. Home care clients may need medical, nursing or therapeutic care, or basic assistance with the activities of daily living. Home care services range from a one-hour weekly visit to 24-hour live-in care.

Willow came home from the hospital after just four months. She was dependent on her ventilator, on oxygen, and her lungs were extremely fragile. She had to fight her way through a small brain bleed, as well as recover from surgery that repaired a hole in her heart. Seven home care nurses, rotating their shifts with Willow’s parents, helped the tiny girl move forward step by incremental step to a more developed level of health and stamina. There were challenges along the way, for sure: While Willow needed to be on a jet vent to maintain proper oxygen levels, that same vent causes scar tissue development in the lungs. Tracheomalasia—wherein the airways are narrow and oval-shaped so they can collapse easily—was also a constant concern.

Increasingly, skilled private duty nurses and clinical managers meet such complex medical needs at home. Physicians sign off on all nurse activities, and patient care plans are re-certified at a minimum of every 60 days.

Says John McNamara, MD, medical director of Children’s Home Care & Hospice Program at Children’s Hospitals and Clinics of Minnesota, “We have sent over 400 children home with trachs and vents and find home care to be a very good alternative with fewer infections and low re-admission rates. Even acute illnesses have been successfully cared for at home.”

Recent advances in medical technology have made home care more viable for chronic patient needs. These include tracheotomy, ventilator, gastrostomy tube, IV and infusion therapies, nutrition assistance, and many cardiac issues. Telehealth service management, electronic medical records, and home sensors all enhance the delivery of home care. Cancer and transplant patients are also recuperating at home with the help of professional aides.

What Pam and Rick Wilson value most about home care for their daughter is that it provides one-on-one tailored care. And unlike hospitals, there are no restrictions on siblings and visiting family members being part of their child’s life.

Cost considerations

Home care for children is not only patient preferred, it is cost competitive … five to 20 times less expensive than facility care. While the average tab for hospitalization can be $5,000 per day—and care for premature infants in NICU is often higher—home care is reasonable by comparison. Many insurance companies now cover extended-hours nursing and home care visits.

Home care is fast becoming an integral part of the care continuum, bridging the clinic-based care model and the actual world in which patients live. We all know this: home is where families want their loved ones to be and it’s where quality of life for patients can best be achieved.

Today Willow is a thriving 17-month-old who weighs almost 19 pounds. She is still on a night ventilator, but is excited about moving beyond this last vestige of technological assistance next month. Her parents and doctors expect her development to be on track as normal and healthy by the time she enters school.

The family recently visited Como Zoo for the first time, where Willow found the passing people equally as curious to watch as the chimps and giraffes. Her mom credits Willow’s fighting spirit this happy conclusion to her harrowing birth. “She always persists and gives it her all to get what she wants,” says Pam. “Willow even plays hard.”

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