WINTERPORT, Maine — Doctors and nurses who have cared for Phineas Tracy — a 20-month-old diagnosed with chronic lung disease of infancy and severe heart, kidney and digestive disorders — know the importance of a healthy home environment.
“Every time we were in the hospital they said, ‘You should really call ‘Extreme Makeover,’” Ben Tracy, Fin’s dad, said on Saturday. “It became a running joke.”
That joke is now becoming a reality because the family of five is applying to be the next Maine family featured on ABC’s “Extreme Makeover: Home Edition.”
The main reason the Tracys are applying to the show is that their two-story 1868 home is less than ideal for a toddler who is constantly tethered to a ventilator that helps him breathe.
“You have to drag it from room to room, and his bedroom is on the second floor so we unplug him from his vent and his oxygen and run him up the stairs to his other vent” every night, the boy’s father said. “For the 30 seconds it takes us to run upstairs, he’s without the oxygen he needs.”
The old farmhouse also has an antiquated heating system and a damp, moldy dirt basement.
“It’s forced hot air and it is not ideal if you’re on a respirator,” Tracy said. “We also burn wood, and the two together is just a nightmare.”
To help keep the air clean inside the house, each room has an HEPA filter and there is “a big pot of water on the stove” to put moisture into the air, he said.
“We’re just sort of making do with what we’ve got,” Tracy said.
Ben and Jessica Tracy thought about applying for “Extreme Makeover: Home Edition,” but with their lives occupied by caring for Fin and their two daughters, Lydia, 6, and Ruby, 4, there never seemed to be enough time to really look into it. When they heard recently that the show is looking for a family in Maine to help, “We thought: It’s now or never,” Ben Tracy said.
A friend of the family, Angela Guay, last week created a Facebook page titled, “Please help the Tracy family win the Maine Extreme Home Makeover,” and posted a moving YouTube video that features pictures of Fin and the Tracy family in the hospital and at home.
Then friends and family started nominating the Winterport family on the “Extreme Makeover: Home Edition” Facebook page, and a producer from the show urged them to apply.
“He said we’re going to be in Maine and to send stuff to” apply, Tracy said. “It just exploded from there. People we don’t even know are pulling for us. it’s just been incredible.”
Fin, who has spent three-quarters of his young life in pediatric hospitals, had trouble breathing when he was born in July 2009 and was diagnosed with chronic lung disease of infancy shortly afterward. The lung disease caused severe problems to his heart, liver and kidneys, which had to work harder to keep him alive, his dad said.
Fin had an operation to close a valve between his heart and lungs when he was just a few months old and before he turned 1, and he also had 30 inches of his intestine removed.
In addition to the respiratory issues, “he’s got a tummy tube and he’s pump-fed,” his dad said.
Fin’s doctors say one of his biggest problem is his tracheobronchomalacia, which occurs when airways collapse while breathing or coughing.
“It’s flat, completely flat,” Tracy said of his son’s airway. “He was not getting any air. The vent applies pressure to keep it open. The hope is as he gets bigger it [his airway] will solidify.”
If that happens, Fin someday may be able “to take breaths on their own,” which is why having a home with good air quality is extremely important, his dad said.
Fin’s last extended hospital stay started on Thanksgiving Day four months ago and lasted just a few days.
“He’s been home ever since,” he said.
The youngest Tracy’s million-dollar hospital bills have been taken care of by insurance and MaineCare, which also helps pay for home nursing care. Ben Tracy has worked for the last 12 years at Hamilton Marine in Searsport and is the family’s sole breadwinner. Jess Tracy is Fin’s full-time caregiver and stay-at-home mom.
Those interested in helping to support the family’s bid to be the next Maine family helped by “Extreme Makeover” can do one of two things. People can go to abc.go.com and select the “Extreme Makeover: Home Edition” link and print out a nomination form and send it in or they can go to the program’s Facebook page and enter the Tracys’ name under the discussions link.
“All the families that apply are deserving,” Tracy said.
He added that with the tremendous outpouring of support already, “even if we don’t win this or get chosen, we feel like we’ve already won.”
The show was in Maine during 2008 for a Milbridge makeover, and in 2005 they helped build a log cabin home for a disabled lobsterman in Wells.
The Tracy’s don’t want a Taj Mahal, they just want a safe environment for little Fin.
“My dream home would be a single level, would have a basement and two bathrooms, and the kids would all have their own bedrooms,” Tracy said.
And most importantly, it would have fresh, clean air for his son to breathe.
“Our focus is on keeping him home,” Tracy said.