Intensive home care
WONDER LAKE – Within months of Jennifer Gulas bringing her sick infant daughter home from the hospital, she found herself being scolded by a home nurse.
The woman believed in homeopathic remedies and was trying to convince Jennifer Gulas not to use antibiotics to fight off Taylee’s pneumonia.
“She yelled at me for the entire 12-hour shift,” Jennifer Gulas said. “I was so new to home health care and so intimidated ... that I was afraid to send her home because I didn’t know if I could do it all by myself.”
Taylee, now 7, was born without an esophagus and part of her airway. She has a rare condition called VATER syndrome, which causes a series of related birth defects in infants. For Taylee, that means she can’t talk, eat, or swallow normally and needs a trach tube.
It also means that she requires constant medical care, so the family has a home health care nurse 120 hours a week.
“Thirty or forty years ago, she wouldn’t have left the hospital,” Jennifer Gulas said.
According to information from the Centers for Disease Control, about 1.3 million patients received home health care services from 7,200 agencies nationwide in 2000, the latest year for which statistics are available.
Gulas and her husband, Don, now use a new nursing agency for Taylee’s needs, with different nurses, and they are extremely happy with the result. But learning the ropes of home health care has been a constant learning experience, Jennifer Gulas said.
Despite the set up’s advantages, the dynamics of having another adult constantly around have taken awhile to get used to.
“Yes, I’m glad they’re here, so [Taylee] can be here and so we can have a life,” Don Gulas said. “[But] they’re always here.”
Everything from driveway parking spot arrangements to common marital arguments can create a new layer of tension, he said. And Jennifer added that sometimes the nurses are unfairly judgmental of their parenting styles.
Aside from the trach in Taylee’s throat, she looks and lives like a regular child most of the time, something the home nurse makes possible. She wrestles with her brother Justin, 9; goes to school; and even takes ballet and tap classes.
“We don’t even think of her as sick,” her mom said. “My main goal with her life is letting her achieve everything that she dreams.”
Taylee, who is considered terminal, has a room covered with images of Hannah Montana — from posters to curtains to bedding. Alongside the bunk beds rests her breathing and monitoring equipment. The machines require night-long supervision from a nurse when Taylee sleeps.
On Saturday the family gets a rest from having a nurse around, but Jennifer has to stay awake to monitor her daughter overnight.
Wayne Rowe, a nurse who’s worked with the Gulas family for six years, is from the family’s new agency, Aurora-based American Home Health. He said he liked working in personal homes because it provided continuity for his work.
He added that home health care is a growing trend for all sorts of situations, including the elderly.
“People can’t afford to stay in nursing homes,” he said.
Insurance companies don’t typically cover the care, so Taylee’s nurses are paid via the Medicaid waiver program, Jennifer Gulas said. That only lasts until she’s 18, though, and her family doesn’t know what they will do after that.
As for the immediate future, each year her mom and dad worry Medicaid will cut the number of hours they qualify for a home nurse.
“That’s more hours that I need to be her nurse instead of her mom,” Jennifer said. “I don’t want to always do it. I just want to be her mom sometimes.”