A mother in Florida is going viral on social media for her critical invention when her son's ventilator alarm went off.
Nicole Orchard, 28, shared footage online of the unpredictable and exhausting reality of being a vent parent—one who has a child on a ventilator 24/7 because of a tracheostomy in his neck.
In the TikTok video, Nicole rushes to her son John's side when his ventilator alarm blared, signaling a life-threatening problem.
"John sleeps in his medical crib in the dining room since he has to have awake and alert eyes on him at all times," Orchard told Newsweek.
On this particular night, Orchard and her husband—who care for John full time—didn't have a nurse, and the 28-year-old mom was monitoring John's vitals from the couch.
When the ventilator alarm went off, she leaped up to reattach his tubing because John's weak lungs can handle only about 30 seconds off the ventilator before beginning to collapse.
"Most of the time, when that major alarm goes off it's because he is disconnected, but sometimes it's because he has a plug and needs a trach change right away, so we run to every alarm. Thankfully, on this night it was a simple reattach of the tubing, and he went right back to sleep," Orchard said.
Just 23 weeks and two days old, John has faced an uphill battle since birth. Orchard said he was on a ventilator for the first four months of his life. After several months on various breathing supports, John required a tracheostomy at 7 months old.
"He plays just like every other baby but just with a few more accessories. He will catch up, though, with time and being home now," Orchard said.
Despite delays due to his extreme prematurity, which was caused by the chronic disease bronchopulmonary dysplasia, and a long 16-month hospital stay split between the neonatal intensive care unit and the pediatric intensive care unit, John continues to make progress. His pulmonologist believes he could be off the ventilator by around age 3.
Life at home, however, is an unrelenting balancing act. Orchard had to leave her job to become John's full-time caregiver, and the family struggles financially on just her husband's income.
Although they receive some nursing support, the nationwide shortage of home health care workers leaves them without help on many nights. "On nights we don't have any nursing and my husband is working the next morning, I will stay up the whole night with John," Orchard said.
Referring to the caption on her viral video, which has over 10 million views, Orchard said that she sleeps so lightly that even a change in John's breathing pattern will wake her.
"Sometimes it's the only way we as a family can make it work since awake and alert eyes [are] just not possible every night," the mom told Newsweek.
Despite the challenges, Orchard has found purpose in sharing John's story. "I share John's journey so that people can learn that just because a baby or child has a trach or medical device it doesn't make their life any less than a 'normal' kid's," she said.
Through social media and a podcast she created, called The Daily Vent, Orchard aims to support other parents of medically challenged children and raise awareness about their experiences.
"If I can teach one person to be more open-minded and informed, then it's all worth hearing all the negative comments I get on posts," she said.
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