25 Year All Stars: Meet Lucas
In 2015, PHS is excited to be celebrating 25 years of bringing patients home to receive care, where they can be with their families and grow in a comfortable environment. To celebrate the amazing journeys our patients have been on, we’re going to be highlighting their stories each month on the blog through the 25 Year All-Star series.
If you want to know something about Disney World, ask Lucas. While many people might go once or twice in their lives, at 25 years old Lucas has been to Disney six times thanks to portable equipment and coordinated care from PHS and other health care providers. And because he is able to travel more safely and efficiently than he did two decades ago, it’s only a matter of months until he goes to Florida again.
An Early Arrival
Born at just 27 weeks, Lucas encountered a number of respiratory issues during his first few years of life. After receiving a trach at two months old, he was in foster care until the age of two when he developed a tracheoesophageal fistula following a procedure and went onto a ventilator before living in the hospital for about two years. Finally, Lucas moved into his mom Julie’s home as a foster child at four years old and was later adopted into their family.
“At that time, he was having frequent bronchoscopies, laser therapies, he had a special airway put in aside from the trach, and was on a ventilator around the clock,” remembered Julie. “And now, fast forward 21 years and look at where he is.”
Today, Lucas has a full time job and has enjoyed playing adaptive softball and kickball when he isn’t travelling.
Over 600 Procedures
Because Lucas has human papillomavirus in his airway, he has needed to regularly undergo laser bronchoscopies to keep his airway open – totaling over 600 so far. Over the years, Lucas’ vent needs have increased, but consistent respiratory care from PHS (his RT is Lindsy, pictured below visiting him) and advances in ventilators have allowed Julie and his other caregivers to adjust settings on the vent with the flip of a switch to give him more support as he gets closer to needing another bronchoscopy done.
“We just got a different one, and it’s much better for Lucas,” said Julie. “We’ve been able to better aerate him and get his respiratory rate down and tidal volumes up, and it just functions so well for him.”
As Lucas has needed intermittent infusions for antibiotics or other IV medications, he has been able to receive those at home through PHS as well.
“Because of all the things PHS has been able to do for us, he’s been able to be home more than in the hospital,” mentioned Julie. “He lived in the hospital for two straight years straight. Being able to have all of our equipment and supplies here has helped us to be more mobile. We don’t stay home just because there’s a vent.”
Travel On, Equipment and All
This family doesn’t let a few extra pieces of equipment slow their travel. After going on a Make a Wish trip to Orlando in 2002 but having to head home due to an illness, Lucas has returned to Florida to go to Disney World six times since.
“He’s defying all the odds, and now he’s working full time, travelling, living the life,” said Julie. “At this point there is no prognosis for him, because he was only supposed to live until age 6.”
As equipment and wheelchairs continue to advance, travel can be accommodated even more. With a trip planned to Florida this fall, Lucas has no plans for cutting back on travel – after all, he has family all over the country to see.
Originally published: April 29, 2015