Luke’s Story

Luke was just a baby when he started missing his developmental milestones.  His pediatrician noticed his muscle tone was weak and he was very susceptible to respiratory infections. Like any devoted mom, she set out to understand why her baby wasn’t on track the way she hoped he’d be

“Luke was constantly sick.  Every cold turned into pneumonia or severe bronchitis.”

After many hospital and specialist visits, testing revealed that he had a rare genetic disorder that affects all of his connective tissues.  Over time and as he grew, his issues only got more serious. His lungs weren’t perfusing as they should.  Tests showed that the exchange of both air and blood were not adequate to support his daily activities.  He had lung damage from the disorder and his chronic illness.

In just his first five years, he was admitted to the hospital more than twenty times.  He was a regular at Boston Children’s where he underwent airway and heart surgery to repair some of the defects.  With so many hospital admissions and stays, his attendance at school was rare and the hospital setting had to serve as both a place to heal and classroom.

As part of his treatment, he took part in several sleep studies where physicians discovered how significant his challenges really were.  The studies revealed significant obstructive sleep apnea which meant his airway would collapse and prevent independent breathing while he was sleeping.  He’d wake many times during the night and his quality of sleep was impacting all other aspects of his growth and development.  If they couldn’t figure out how to help him rest, there’d be no opportunity for his lungs to repair themselves.

While he no longer needed an acute-level of care, he certainly wasn’t well enough to go home.  In order to help with his sleeping and breathing issues, his team at Boston Children’s recommended he be transferred to Franciscan Children’s for the post-acute respiratory therapy and behavioral health supports he needed.

“I remember being skeptical when I arrived.  We’d been at Children’s so long, we knew it inside and out and were used to the way they cared for Luke.  But it didn’t take long before we saw how important the rehabilitation phase is and how the care Luke received at Franciscan’s really complemented the experience at Children’s.  We were pleased to find that all of our Boston Children’s specialists were working in coordination with our care team at Franciscan,” said Janis.

The primary task that needed to be accomplished was getting Luke to tolerate the CPAP mask.  CPAP is an acronym for “continuous positive airway pressure” and requires the patient to wear a plastic mask that covers his nose and mouth.  This had been an ongoing two year struggle.  Convincing a five year old with Autism to wear it required some magic – and thankfully, Psychologist Dr. Greg Young was up to the task.

When Dr. Young first met Luke, he wouldn’t even tolerate the mask touching his hand.  Meeting daily, he got to know Luke better and learned that pretending to be a racecar was one of Luke’s favorite activities.  Playing racecars together became a reward for tolerating the mask, helping Luke become more comfortable and accepting of the idea.  “We worked up from the mask just touching his hand to his arm to his face.  Gradually, we were able to get him to tolerate it for an hour and eventually, we got to the point where he could wear it through the night,” Dr. Young recalls.

But Dr. Young’s work to help Luke didn’t stop there.  “I would spend a bit of time with Luke each day but his mom and dad were there all the time and would often be the ones to work with Luke when he’d have a tantrum.   They followed our protocol, being consistent and persistent in getting him to wear his mask,” he explained.  “These two factors are the greatest predictors of positive outcomes for behavioral health treatment.”

Because Luke is also on the Autism spectrum, Dr. Young created a simple rules system for the mask.  Luke would receive rewards for wearing his mask and had to agree that only adults could touch it.  According to Janis, “Not only did Dr. Young do a great job working directly with Luke, but he taught me how I could support Luke’s need to sleep. I learned how to rework our nighttime routine so that sleep would come easier.That was a great benefit to both of us and made the transition home one that I felt prepared for when the time came.”

In less than a month, Luke made enough progress to go home.  While there’s much that’s uncertain about his future, Janis is grateful for the partnership she experienced between Boston Children’s and Franciscan Children’s that helped Luke and her family through a difficult time.

“The energy and optimism of the staff made a difficult situation bearable.”

“Without the support of both teams, Luke would not be where he is today.”

Click here to learn more about Luke and how his bond with Dr. Young was key to a breakthrough in his treatment.

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