25 Year All Stars: Catching up with Nick
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.
For the last 27 years, Nick has been a number of things. A Twins fan, an animal lover, a Meals on Wheels volunteer. But more than anything else – a trailblazer. We’ve already told you his story and introduced you to his family and care team, but Nick is without a doubt an all-star, and we were able to catch up with him and his mom recently to see how he’s doing.
A streak that just keeps going
The first year Nick and his family lived in Minnesota after moving from California when he was 7, Bernadette remembers her son was hospitalized 13 separate times. Today. he hasn’t been in-patient at the hospital for 12 years – a streak that shows the power of his personal strength and the holistic approach his family and caregivers follow.
“We can manage everything at home – caring for his RT illnesses with specialized nebs the PHS pharmacy provides, caring for his nutrition by using the PHS dietitians,” mentions Bernadette. “We see his strength and energy improve by changing his formula. Changing the ventilator has helped him with his respiratory stamina. Being at home is where it has to be.”
For Bernadette and her husband Steve, this means maintaining a normal lifestyle where jobs are steady, siblings receive the attention they need, and the family can go out in the community – to church, the movies, and everything in between.
Life on the run
Initially only expected to live a few years, today Nick leads a life that rivals even the busiest socialites. When he isn’t at his work program (this year he dressed up as Santa and delivered gifts to staff), Nick is busy spending time with family, friends and nurses – fishing, bowling, and becoming king of the house while his parents went to California.
Because he is healthy, happy, and enjoying a high quality of life, Nick’s spirit, force, and infectious smile are a constant in their household and community.
“Maybe parents don’t think they’re going to see the light at the end of the tunnel – but I’m here to tell them they can live a tremendous quality of life on all this equipment, and just go about your day,” offers Bernadette. “It’s just what we expect. It’s no different than anyone else – we just continue to go.”
Originally published: April 2, 2015