JAY – Carley Pomerleau calls her portable lung a time capsule.
The lung sits along a wall in Carley’s room. Her mother, Dianna, put in foam bedding and a purple blanket to make it more comfortable for the eight to 10 hours Carley needs to sleep in it.
Her wheelchair is accented in purple, too. It’s her favorite color.
The portable lung provides negative pressure while she sleeps to help pull out the carbon dioxide that her body can’t otherwise exhale.
The 12-year-old sixth-grader has myopathy, which causes weak muscles. In Carley’s case, it also brought on scoliosis, or curvature of the spine. Her left side is weaker than her right.
Carley had her first full night’s sleep Monday since she started sleeping in the lung in mid February.
Her mother, Dianna, worked with specialists in Portland over the phone to increase the pressure in the lung.
“It worked beautifully,” Dianna said.
Sleeping in the lung is like sleeping in a tanning bed for 10 hours with your head sticking out. It’s a challenge.
The other night Carley’s forehead itched. “She had to say, ‘Mom, I need my forehead scratched’,” Dianna said, because Carley couldn’t get her hands out.
A wireless doorbell will be installed in the lung so that Carley can ring when she needs help. For now, Dianna sleeps nearby.
Carley’s sister, Kurstin, 13, her dad, Craig, and mother all know how to work the medical equipment in her room.
Back to school
Carley, wearing a purple T-shirt, wheeled her chair across the hardwood floors Monday into her bedroom at her home on Rose Ridge.
The sixth-grader was looking forward to going back to school for the first time since mid January. She’ll only stay a couple of hours, but she’s glad she’s going to see her friends.
“I like school,” Carley said. “I like to do my school work and socialize.”
She gets “good” grades. Her favorite subject is math.
“Sometimes it’s easy, sometimes it’s hard,” Carley said.
The plan is to gradually build up her time in school. She has to be careful of germs that could affect her because of a recent illness and a weakened immune system that required hospitalization.
It was noisy in the hospital, and she didn’t care too much for the smell or the food, Carley said. She likes home “better.”
A bunch of friends, who are now helping organize a benefit supper Saturday, visited the hospital and talked “girl talk.” Kurstin’s friends are making desserts for the dinner.
Sports gap
Carley’s bedroom walls are painted purple and a smiley-faced pillow in the inspiring color sits on her bed.
Carley was also born with impaired eyesight and can see out of her right eye close up. She has glaucoma and cataracts. She wears special glasses for both seeing and reading.
The Jay school system bought a talking laptop to help with her schoolwork. She also uses a machine that magnifies items so she can read them both at home and school. She likes to read but needs, in addition to reading glasses, lots of light and large-print books. She also enjoys sewing decorative bags.
The most challenging thing to Carley is no longer being able to play sports.
She enjoyed playing T-ball, cheering and therapeutic horseback riding when she was younger. She is again looking to find a place that offers the horseback service, and her therapist is looking for sports she can participate in.
Carley said her favorite thing these days is to hang out with her sister.
“We listen to the same music sometimes,” Carley said. “She’s very good to me.”
Brave and strong
Dianna and her husband keep telling their youngest daughter that she’s “as tough as nails.”
“She is the toughest person we know, to go through everything she goes through and still tell people to have a good day,” Dianna said.
The couple also admire their oldest daughter for her commitment to Carley.
“She’s as strong as Carley,” she said.
Carley was born three months premature and the family committed then to do what needed to be done for her.
“I think Carley’s brave every day,” Dianna said. “Every day she gets up she faces numerous challenges – and she’s always got a smile.”
dperry@sunjournal.com
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