A Life for Lucas
Little Lucas Olivieri sits in a comfortable chair at home mesmerized by “Dino Dan” on TV. With the help of a pediatric nurse, he breathes in a stream of medicated mist while a motorized medical vest steadily vibrates his chest. The half-hour treatment improves the function of his severely compromised lungs.
Lucas turns his head: familiar footsteps coming down the stairs. His bright blue eyes search the family room. Then he sees him: “Daddy!” squeals the 22-month old, raising his arms in joy.
It’s a familiar scene at the home of Elaine and Mario Olivieri in Fargo, but the past year has been anything but familiar...
Special needs and more
Lucas’ life began with difficulty. Struggling with basics like breathing, eating and growing, he had special needs that overwhelmed his birth mother. Elaine and Mario stepped in, opening their hearts -- and home. Lucas joined them Dec. 31, 2010, and never left. They’re now adopting him.
But the needs of Lucas went far beyond their expectations -- frequent and lengthy stays at the Sanford Children’s Hospital intensive care units, heart surgery, treatments, continuous oxygen, close monitoring, fast action if a respiratory infection sets in, and all the challenges that go with weakened immunity.
Was a life at home even possible for Lucas? And how would Elaine and Mario, who already had two children of their own, handle this heavy lift?
At 10 months old, Lucas was diagnosed with a rare, severe and complicated genetic disorder. For reasons unknown, nerve cells didn’t migrate properly during early brain development. He also had a life-threatening heart abnormality.
“We knew the diagnosis was grim, and males do worse than females,” says Elaine.
“If they even survive pregnancy, they typically live just five days to five months.”
Even so, Elaine and Mario wouldn’t give up. They wanted Lucas to have the best life possible, however short or long it might be. But how?
An important discussion took place in March 2011 following a 30-day hospital stay.
Lucas had survived difficult heart surgery, respiratory failure and more. But at a year old, he weighed just 14 pounds and couldn’t sit up on his own. Developmentally, he was far behind.
In preparing to take Lucas home, Elaine and Mario met with a Sanford Children’s social worker. She explained the resources available to them, including at-home nursing care.
“I wasn’t so sure about the idea of having a nurse in our home,” recalls Elaine. “Now that it’s a year later, I can honestly say the help from Sanford Home Care was absolutely life-changing. We couldn’t have done this without them.”
Like many people, Elaine didn’t realize their particular situation was right for Sanford Home Care.
“I always thought that type of thing was for people who were totally incapacitated and needed around-the-clock care,” she says. But a visit from a Sanford Home Care staff member on the day they arrived home from the hospital revealed important information. Sanford’s home-nursing care is:
- * Individualized. For Lucas, nursing care was needed 7 a.m. to 5 p.m. daily. This met his medical need, plus it allowed Mario and Elaine to keep on working and caring for their other two children -- 9-month-old Marco and 5-year-old Cole.
- * Informed. Nurses from Sanford Home Care partner with Lucas' medical team at Sanford Children’s. Working together, they identify symptoms early, initiate treatment promptly and ultimately prevent hospital stays. “Now we can be proactive rather than reactive,” says Elaine. “What a difference!”
- * Available. “Even on Christmas weekend, when Lucas got pneumonia, we had the help we needed,” says Elaine. “The nurses worked closely with his doctors and Lucas was able to stay home and get well.”
Growing and happy
Fewer and shorter hospital stays are just part of Lucas’ story. He’s been sick less, too, thanks to decreased exposure to germs. And he’s caught the spirit of his big brother Cole. They play together -- a major factor in Lucas’ development.
“Today Lucas is growing, walking, speaking in sentences, eating, interacting -- and laughing,” says Elaine. “He has so many more good days than bad days. We make the most of them."
Mario says Lucas is proving everyone wrong. “He went from just surviving to living a life,” he says. “A big part of that has been the consistency, helpfulness and professionalism of these nurses. They’ve helped us keep our sanity, too.”
Elaine and Mario hope and pray the good days will continue. Says Elaine: “Our short-term goal is to get him off oxygen. Long-term, I’d like to see him grow up to be a healthy teenager.” Says Mario: “I want to see him play hockey -- he’ll make a terrific goalie!”
And Lucas? He’s just happy with Dino Dan, a hug from Daddy … and the gift of home.
Posted Date: February 2012