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. Our first highlight will be a patient who started with us the same year PHS (or PHRS at the time) opened its doors – 1990. Check back as we chronologically feature patients who have come on service with us and continue to thrive!
With two older sisters, Peter is a proud uncle and recently gained a new title – godfather. He is happily living about a half hour away from his parents’ farm in a vent home, a space he has come to love and now considers his home.
“The first Christmas after he moved in, we had our celebration it was getting late, and he says, ‘guys, I’m getting tired. I need to go home,’” remember Brian and Cindy, Peter’s parents. “Because that space is home. He loves it there.”
At 25 years old, Peter has grown up alongside PHS as one of the first patients to start on respiratory service after we opened our doors. Today, he is the first all-star of a series that will continue all year.
Despite having incomplete quadriplegia, Peter stays healthy thanks to advances in equipment, creative problem solving, and clinicians who ensure his needs are being met.
When Peter was born via C-section due to fetal distress, he was wedged tight with the back of his head touching his bottom and his neck was hyper-extended when they took him out, resulting in a spinal cord injury.
Brian and Cindy remember deciding to show their oldest daughter, Molly, a photo of Peter before she had met him, concerned she would be scared by all the equipment and cannulas connected to him since she was only five years old at the time.
“She wondered what the rolled up blanket was behind his head – no questions about the tubes with blood or anything, just the blanket,” laughs Cindy.
For Peter’s family, balancing a home life and hospital life was a challenge – with two young daughters at home and a farm that Brian ran with his family, splitting time between locations didn’t come easy.
“When we were at the hospital I felt guilty because I wasn’t keeping up my end of the work load at home, and when we were at home, I felt guilty because we weren’t at the hospital with Peter,” says Brian. “We would make the trip 2-3 times a week up to the hospital, and on Sundays the girls would come along with us to see him.”
When it finally came time to transition Peter home, PHS was happy to be by his side to provide respiratory care and help Cindy and Brian have their entire family home together for the first time.
During his first year, Peter was intubated a number of times and eventually had a tracheostomy at six months old. The day before his first birthday, he went home – reaching a goal everyone had to transition him home by one year old.
“We had some unique decorations at home,” Brian remembers. “We had carpeting in the back of closet walls to lessen the sounds since we had nursing in the home. We had big Dewar oxygen tanks outside the house, and air compressor in the basement – things were not compact on a wheelchair in 1991.”
Although there were some bumps in the road with hospitalizations mixed in with time at home, Brian and Cindy adjusted to having nurses in the home and transitioned into their new normal, complete with their daughters and Peter, a farm to run, and PHS clinicians coming to their home on a regular basis to provide Peter’s respiratory cares.
“No matter who we’ve dealt with at PHS, it’s always been one steady, positive experience,” mentions Cindy.
Once Peter was at home, he took off – talking, gaining weight, and being a regular one year old. Thanks to his home environment and being able to play around his sisters, Peter flourished.
“At the time, our doctor made house calls to our place,” remembers Cindy. “We would weigh him regularly, and his doctor thought, ‘oh, he must be puffy or something. He can’t be doing that well.’ But he was.”
Today, Peter is an adult who loves to use technology and hang out with his family. He graduated from high school, and did most of the things his peers do – including attending prom. He was able to go to Disney World through a wish program. Two weeks after graduation from high school, Peter moved into his vent home, where he has been for a number of years now.
“Dan (PHS staff) was our RT and helped a lot with the move,” says Brian. “PHS did orientation for the nurses here, and they’ve always been willing to help and teach everyone who’s working with him how to use his equipment. You have always been willing to go above and beyond.”
Looking forward, Cindy and Brian mention researching job opportunities for Peter – once life slows down a little bit, and Peter settles into his new role as godfather.
PHS is ready to be by his side for the next 25 years, helping him go wherever and do whatever his future holds.Originally published: February 19, 2015