Parents learn to care for chronically ill children
Updated On: Nov 07 2012 05:00:00 PM EST
A pediatric intensive care group in South Florida is working to reduce the time children spend in the hospital by teaching parents how to care for their child at home.
Colin Guanila spent much of his life in and out of hospitals since he was born on February 27th, 2011. His premature birth, brought on by a placental failure, led to a host of health problems that required multiple surgeries and medications.
"You walk into the NICU -- we used to hold our breath walking in every day because you never knew what was going to happen or what you were going to see," said Amanda Guanila, Colin's mother.
From the beginning, the focus was getting Colin well enough to go home.
"It's always a transition. Most families are actually quite scared when they come to the ICU," said Dr. Teresa Duncan with Pediatric Critical Care of South Florida. "It's a daunting experience to be here with all the machines, the beeps, the buzzes, the noises, and the fact that their child is fragile -- they're always afraid that they'll do something wrong."
Pediatric Critical Care of South Florida helps families transition from hospitals to homes through hands-on education.
"We teach them about what we're doing. They participate with us in rounds every day. They're allowed to ask questions and be a part of that. We spend bedside time with them to teach them about their child," said Duncan.
In time, parents gain the confidence to do whatever is necessary, including resuscitating their own child.
"It seems like something you would never want to do, but in some of these chronically ill children, it's a reality," said Duncan. "It's just what they have to deal with."
Amanda and Ben said caring for Colin at home has made a big difference in his development.
"We are just flying. Grown six inches in six months. He's just growing. He's doing tremendous," said Amanda Guanila.
The family focused approach means patients work closely with staff in the hospital setting and doctors and nurses visit the family's home to help ease the transition.
Studies have shown that many children with special needs have a greater chance of advancing physically, emotionally, and mentally in a home setting.
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