Carrie Jones often meets people on the worst day of their lives.
She’s a tracheostomy nurse at Ann and Robert H. Lurie Children’s Hospital in Chicago. US News and World Report ranks it as one of the top pediatric hospitals in the nation. Sandwiched between Prentice Women’s Hospital and Northwestern Memorial Hospital, Lurie Children’s has a reputation for treating kids whose illnesses seem hopeless. On the cutting edge of medical treatments, Lurie Children’s boasts an impressive list of accomplished physicians and nurses who transplant organs, cure childhood cancers, and mend the tiniest hearts back together.
It is a place of devastating lows and miraculous highs.
“We see families go through the worst days of their life,” Carrie says, who joined Lurie’s nursing team nearly 18 years ago. “I have to process that every day. It can be very sad and it can be miraculous. And it teaches me to face one day at a time. Because tomorrow’s picture can be completely different.”
Carrie’s job is never easy. As a trach nurse she walks families through the decision to place a trach in their child’s airway. Often it is a life or death decision. “It’s frightening and devastating for parents,” Carrie says. “Getting a trach is a life changing thing.”
Carrie, who graduated from Timothy in 1995 and is now the mom of three Timothy students, volunteered to be a candy striper at Elmhurst Hospital when she was in high school. She needed to fulfill service hours for graduation, so she volunteered in every unit. It was through volunteering that Carrie discovered that nursing was her calling. “God gave me the passion to work in tough situations,” Carrie says. “And the teachers I had at Timothy helped me understand my strengths and gave me the courage to pursue nursing.”
After graduating from college with a degree in nursing, she applied for a job at Lurie Children’s, first working on the pulmonary floor with kids that were still dependent on a ventilator, but going home. After rotating on and off other floors, Carrie finally landed as a trach nurse on the ENT team where she’s been for the last five years.
Many of her patients have SMA, or spinal muscular atrophy. SMA is a disease that ravages the muscles, stealing the victim’s strength to walk, and often swallow and breathe on their own. But it spares the brain. “I see kids on the brink,” Carrie says. “If they have Type 1 SMA, they have to be trached and vented or they die. I have to help parents understand this is life-threatening every single day.”
The most fragile kids spend months even years at Lurie Children’s. It's these families, ones that are forced to settle into the unnatural life of living in a hospital, that Carrie can deeply connect with. “The nice thing is you develop relationships with these families,” Carrie says. “Sometimes I’m flat out asked if I’m a Christian—and if I will pray for their child. It’s awesome to find that in your career—to be able to tell parents that you are a believer and to share these moments with them.”
It’s these intimate moments, where the lines between nurse, caregiver, and family often blur, when impossible decisions have to be made, that Carrie can openly share her faith. She has stood by and prayed with parents as their child’s body simply surrendered to the fight. “I pray a lot for wisdom, so I say the right thing at the right times. My faith really helps me keep my sanity,” Carrie admits. “I know this is not about me. God created all these beautiful children and I get to care for them.”
As a nurse, Carrie also gets to celebrate miracles with families. She threw a party for a little girl when her trach was removed after seven long years. The girl was released and left the hospital breathing on her own for the first time in her life. “I got to be part of this family’s best day of their lives,” Carrie says. “It was amazing to watch her go home without a trach.”
One of her favorite patients was a baby, whose parents noticed shortly after birth that her arms and legs seemed floppy. And as the weeks passed, she didn’t seem to develop the muscle tone to hold up her head. She missed all the developmental milestones. After a round of genetic testing, it was confirmed the baby had Type 1 SMA, which is the most devastating form of the disease.
Carrie was the trach nurse that cared for the baby.
There was, however, a tiny glimmer of hope, because the FDA was in the process of approving a promising new drug that could possibly slow down and even halt the ravaging effects of SMA. But the days turned into weeks, and the baby’s health continued to rapidly decline. And no FDA approval came.
There was no miracle drug, no treatment to give her.
Carrie and the rest of the team continued to care for the baby. But even through the web of IV’s and tubes and uncertainty, still laid a child created in the image of God. A child that was deeply loved. But every day, SMA seemed to steal another piece of her. Time seemed to stand still, yet pass too quickly. Everyone feared the drug would not be ready in time for her. “I just prayed for them,” Carrie says. “We honestly thought we were going to lose her.”
Finally, after spending nine weeks in an intensive care unit and with a terminal diagnosis, the parents made the impossible decision to let her go. Waiting for the drug didn’t seem to be an option anymore. They called extended family to come and say goodbye.
“The day we thought we were going to lose her was so emotional—for all of us,” Carrie chokes. “It is so hard to watch children suffer. We were just waiting for the FDA’s approval. And finally, finally on that very day, we heard the drug was approved and coming for her.”
Instead of turning off the ventilator, the team administered the new drug.
Even as it coursed through her tiny veins, there was still no real assurances.
But there was hope.
And instead of attending a funeral, Carrie and the rest of the team readied the family to take their baby home.
It’s these kids, the ones that fight for every breath, that keep Carrie coming back to work every day.
And so every morning, after she gets her own kids ready for another day at Timothy, she makes her way downtown to Lurie Children’s. She finds the strength to face another day of uncertainty with fragile patients, because of her faith. It is this faith that gives her the strength to be a disciple of Christ to the vulnerable. Faith that was nurtured and tended by teachers and mentors and coaches at Timothy so many years ago. It is so ingrained in her core that she can face impossible diseases with peace that passes all understanding—and offer hope.