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25 Year All Stars: Meet Paul

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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.

In 1991, Paul’s parents were given a grim prognosis for their son – he would have one to three years to live. Having only been in business for two years when Paul came on service shortly after, PHS was committed to helping him grow up at home with his family while receiving the care he needed with respiratory therapy. Now, 24 years later, Paul has not only gone on to surpass all expectations but has done so with a great sense of humor and a love for Thursdays – and today, he is our second All-Star.

“I am one of the original people, after all,” Paul says with a smile.

Adapting to needs

unnamed (4)Paul and his twin sister came into Julie and her husband Paul’s lives when they were three months old, having been in another foster home previously. Born with spina bifida, Paul had recently had a tracheostomy after an Arnold Chieri malformation put pressure on his brain stem and paralyzed his vocal cords.

Julie and Paul met their two new children shortly after he was trached and learned how to care for Paul and his needs. Not knowing anything about spina bifida, the task was daunting but they knew it was right.

“During the first year of Paul’s life, he was in the hospital as much as he was at home – I would count the days,” remembers Julie.  “There were just so many things going on.”unnamed (17)

But by learning how to best care for Paul and knowing whether they needed to go to the hospital or not, Julie and Paul were able to stabilize him and spend more time at home.

“There are a lot of things that keep Paul healthy – a shunt on the top and side of his head, a g-tube, his vesicostomy, his trach, his ventilator, and other needs that come and go.  We are always adapting.”

Bringing normalcy to childhood

When Paul was young, Julie always kept one thing in mind – let him be a kid.

“I look back, and seriously don’t know how we did it. But we made it work. You have to get them out, you have to stimulate them. You can’t just stay home,” she says.

12-1997One memory that sticks out? Paul going on the corkscrew at Valleyfair.

“When Paul was 7 or 8, we took the family to Valleyfair and my husband and I would take turns bringing the girls on ride,” remembers Julie. “Paul had seen his sisters going and told me he wanted to go on the corkscrew, so before I could think twice, we went on the ride – me, Paul, and the Ambu bag. 30 seconds later, the ride was over, but we were able to give Paul an experience that we’re sitting her talking about today.”

Running into breathing issues

unnamed (19)_cropUntil he was 10 years old, Paul only needed to be on a ventilator at night and was able to go to school without worrying about hauling the then-large piece of equipment along. But when he started to have trouble breathing and could no longer make it through the day without his vent, Julie and her husband considered what could have triggered this change.

“We got him a rabbit for his 10th birthday and it ran around the house,” remembers Julie. “I thought that since he started declining right after we got the rabbit, he must have an allergy. So we got rid of the rabbit, but he was still dependent on his ventilator throughout the day.”

PHS helped Paul adjust to his new needs by putting a tray on his wheelchair to hold the ventilator, but Julie was still looking for an answer to the change in Paul’s breathing functionality.

unnamed (11)_crop“I suddenly remembered a condition a physical therapist had told me when Paul was a baby – tethered cord – which can’t be detected through x-rays or CAT scans.”

Paul met with a doctor and underwent surgery, where it was confirmed that he had a tethered cord. His spinal cord was loosened from the scar tissue that was causing problems, but ultimately Paul continues to be most comfortable – and healthy – on the ventilator 24 hours a day.

Looking back on PHS

Initially starting with a different company, Julie and Paul were soon referred to PHS by word of mouth and they quickly made the switch.

unnamed (15)“In the 1990s, we didn’t see many kids like Paul around,” says Julie. “It was such a new frontier – today, there are so many kids surviving so much more than it seems like they were then. The technology was a whole different ballgame, and has grown leaps and bounds.

“But PHS – it was in their name, they were pediatric – so we jumped on board. And now, he’s an adult – and he’s still with PHS.”

Over the years, Julie and Paul remember PHS staff coming out in the middle of the night when equipment malfunctioned and receiving training from Bruce Estrem, the manager of clinical education at PHS. She still sends people to PHS for training to ensure they are able to properly care for Paul.

“It’s so nice to keep everything running smoothly, and PHS helps that happen” says Julie. “We try to realize things have to change, but always appreciate it when we can continue our lives status quo.”

Thursdays with the animals

Ask Paul what his favorite day of the week is, and he’ll tell you Thursday without hesitation.

DSC_0827_compress“Usually people like Saturdays or Sundays because it’s their day off, but not me. I’ve been volunteering at the Como Zoo for over five years – even on holidays,” says Paul.

A self-proclaimed animal encyclopedia, Paul is there each week to answers questions visitors might have at the particular exhibit he’s stationed at that day. His bedroom also reflects his love for animals – photos of them cover the walls, and he can recite an impressive amount of trivia about various species.

“I very rarely get stumped. When I do, I just Google it,” he says.

Independence for the future

Looking ahead, Paul plans to keep busy by going to LifeWorks four days a week and the Como Zoo on Thursdays. He and his family also regularly discuss the possibility of him moving into a group home in the future as he and his family get older.

“We want Paul to have a home with peers,” mentions Julie. “There are group homes all over, but we want to make sure we find a place that all of us are comfortable with. So it might not be right now, but someday, Paul will probably move into another home.”

With a busy schedule and exciting plans for the future, Paul’s stories and vibrant personality bring light to every person he meets – making him a true all-star.

Originally published: March 5, 2015