Where the Heart Leads
Eleven-year-old John Lewis made something very special at camp this summer. It wasn’t the crafts or the S’mores or the bouquet of flowers picked especially for his date at the big dance on the last night. It was memories of a fun-filled week doing just about everything any other boy his age could possibly do.
Except this was not your typical summer camp. At “Camp Victory,” John didn’t look at all like a kid who needs a ventilator to help breathe as he swam, went rock-climbing, felt the thrill of zip-lining through the forest trees, and made an appearance as Superman.
Woven into those memories, like threads in a cherished comforter, is a remarkable friendship with Jennifer Fradaneck, a respiratory therapist at the Good Shepherd Rehabilitation Hospital Pediatric Unit in Bethlehem.
Jennifer volunteered to spend the week with John at PA Vent Camp near Blooms-burg in June, serving as his primary aide but more importantly, as his friend. The two met when John, who lives in Canadensis, was a patient on the pediatric unit for eight months from January through August 2012.
“There are some kids you just get attached to,” says Jennifer. “Those months that John was at Good Shepherd made my work days happier because he was always there to make me smile in many ways. I meet many children over the years who are so ill and it breaks my heart. Yet, as I care for them, I get closer to them and their families, like John, and I start to feel less sad about their illness as they improve and get better. It’s always rewarding to see the kids go home with their families, yet every once in awhile there is one that holds a very special place in your heart.”
Clearly, that feeling is mutual. “Jenn went above and beyond in her care for John,” says John’s father, Walt. “I could not possibly say enough about the gift she has been in John's life and ours as a family.”
John came to Good Shepherd to help recover from a devastating illness, acute disseminated encephalomyelitis (ADEM), which attacks the central nervous system causing inflammation of the brain and spinal cord. The cause can be viral or bacterial and with John, as in many such cases, acute symptoms come on with life-threatening swiftness, resulting in neurological and visual problems.
John had been lethargic for about a week before his condition became critical, his father Walt recalls. The following Sunday, John woke up and “was just in a bad state,” limp and gasping for air.
John was admitted to Lehigh Valley Hospital for one month before being transferred to The Children’s Hospital of Philadelphia for further evaluation and treatment. A tracheostomy was performed, an artificial airway surgically created in his windpipe with a small tube connecting him to a ventilator to help him breathe. John continues to use the ventilator although he is able to spend long periods of time off it. He continues to take nourishment through a feeding tube inserted in his stomach.
“At camp, I did all his daily care, getting him ready for the day and then ready for bed at night, and I also set up his tube-feeds and made sure he got his medications throughout the day,” says Jennifer. “Sometimes it was a challenge, but volunteering at vent camp with John for five days was just a great experience to continue a friendship we had started at Good Shepherd, because he became part of our family.”
Sitting on the spacious front porch of their farmhouse sipping homemade lemonade, Walt and Dot, watched as their son, “Buster” as they call him, played in the yard with his sisters and dog, Ziggy.
“Jennifer has just been lovely,” says Dot, John’s mother. “There aren’t words enough to express her kindness.”
John remains unsteady on his feet, his fine motor skills are not fully restored, and his vision is somewhat impaired, but he gamely moves about with a big smile on his sweet face, eager to join in the fun.
The Lewis’s are deeply grateful not only to Jennifer, but also to the entire Good Shepherd team at the pediatric unit.
“Dot and I are so thankful to each and every therapist, doctor, nurse, aide, housekeeping, and security staff member,” says Walt. “Each and every one of them was wonderful. The genuine kindness, care and accommodation that were offered to John and to us over the many months John was at Good Shepherd is something that we will always be grateful for.”
John still has a lot of catching up to do as he enters fifth grade at Swiftwater Elementary School, but Walt and Dot remember how sick he was and marvel at the progress he’s made.
“When he came home he was in a wheelchair and a walker. He couldn’t do anything,” says Walt. “At this point, he’s got a solid year of a positive trajectory.”
Adds Dot, “When he started teasing his sisters, I knew he was back to normal.”
Photocaption: John Lewis and respiratory therapist, Jennifer Fradaneck, at Camp Victory.