If there’s one thing Axle Lensky loves above all else, it’s dancing.
“Axle is always moving and grooving,” North Lensky, his dad, said.
The Fremont, Michigan, 2-year-old has had plenty of reasons to celebrate this past year.
It featured live music by music therapists—Beach Boys songs, of course—and colorful leis handed out to family and care team members.
This past summer, as Axle’s second birthday approached, his parents, North and Kara, wanted to mark the occasion with another luau. It had been a full year since he’d left the NICU.
At home, they hosted a small party with a few family members. They had toucan tablecloths and offered fresh fruit, and they repurposed the 6-foot celebratory banner from the first luau at the children’s hospital.
Axle donned a crab-themed shirt, shorts, orange sunglasses and a bright yellow lei.
And best of all, there was dancing.
‘He’s ready to run around’
Doctors diagnosed Axle at young age with chronic lung disease, stemming from premature birth. It can lead to asthma, although most children learn to live with it as an adult.
These days, Axle is exceeding milestones in growth and development.
To help with his breathing, doctors had early on placed him on a ventilator. At a follow-up visit shortly after he left the children’s hospital, the pediatric pulmonology team discussed the possibility of taking him off the vent altogether.
Lucky for Axle, his dad is a nurse.
At hospital visits, North and Kara check in with the respiratory therapists and catch up on Axle’s care, talking shop about vent specifications and med checks.
When Axle is connected to the ventilator, he pulls around a small cart that holds the ventilator. He takes it everywhere he goes, and as he walks is followed by about five feet of breathing tube with the cart in tow.
“He wants off of the ventilator so bad,” North said. “He’s ready to run around.”
Axle has been walking for months, and loves to run too.
“He’s a big mama’s boy,” Kara said.
Along with his love of all things dance, he’s keen about music, too. He even has a little a toy piano to get him started.
He and his family also spend a lot of time outdoors.
“We go on walks and visit state parks and go for nature hikes,” Kara said. “We always say that Axle is like five kids in one. We have his vent, his monitor, meds and more, no matter where we go.”
Those adventures give North and Kara plenty of opportunities to take pictures of their little guy. Kara jokes that she has about 36,000 photos of Axle on her phone.
“You can’t delete one, because what if it’s one that you might like?” she said.
At first, North and Kara had to take Axle to the hospital a few times a week. Later, they transitioned to in-home nursing care. Axle now visits the children’s hospital just two or three times a month.
“June is the first time in months we didn’t even have one doctor’s appointment,” North said.
Over the past year he’s had three surgeries, including a hernia repair and tubes put in his ears. In January, he underwent craniosynostosis surgery, in which doctors placed a device to help shape his head. At a surgery in February, the extensions were removed.
The outcome impressed the family: His skull was widened to create more space for his brain to grow for continued development.
Axle is now walking on his own and he’s able to talk, too, even when he’s using his ventilator.
He dressed up as a lumberjack and a giant pumpkin for a fall photo shoot and was the werewolf Lobo from his favorite TV show, Super Monsters, for Halloween.
“He says hey, hi, thank you, Dada, and even knows the characters to his favorite TV shows,” North said.
For now, Axle can remain off his vent about six to eight hours a day. He doesn’t use it during heavy activity or play.
As he gains strength, his parents are hopeful he’ll soon be off the vent for good.
But they’re careful to take progress in stride.
“We were hoping to be completely off the vent during the day, and hope to have him completely off the vent by summertime,” North said. “Every week, we increase his time off the vent by an hour or so.”
Courtney Roberts, a respiratory therapist at Helen DeVos Children’s Hospital, sees Axle every time he visits.
“Gosh, look how long his hair is,” Roberts said at a recent appointment with the family. “How long is he up to off the vent?”
Roberts said Axle is on a quarter liter of oxygen all the time, but his oxygen saturation is similar with and without the vent—95% with the vent, and 98% with no vent.
She was impressed at his progress.
Axle still needs the ventilator while he sleeps and takes two breathing treatments daily: Pulmicort and albuterol.
And amid it all, he’s a happy little boy.
“We’re getting there,” Roberts said, encouraging his parents. “Everything looks great from my perspective. So keep on doing what you’re doing with him at home.”
As Axle’s use of the vent tapers off, he’s been falling asleep faster. He takes naps earlier in the day, too.
Tricia Browneye, NP, a nurse practitioner with pediatric pulmonology, joked that Axle likes to give her the “mean mug” when he visits.
“We definitely can keep working on his progress,” she said. She’s hopeful that by spring he’ll be off the vent completely.
North and Kara are planning a trip to Colorado for spring break, and they want to be sure Axle can travel.
“Plan the trip,” Browneye said. “He’ll do just fine. And we can adjust his oxygen if needed.”
North and Kara took Axle home after a daylong visit to the hospital with various appointments bundled together.
“He’s really good with hospital visits,” Kara said. “But we’re hoping it will become less frequent for him as he grows. All we can do is be hopeful at this point.”