Colin's CAPE Crew
At three, our son, Colin is thriving. Our hallways are filled with belly-giggles and laughter and “let’s race” as our son chases his big sisters with pride, bursting with his newfound sense of independence and rolling around in his own set of wheels. At three, our son, Colin is learning in our neighborhood preschool. Each morning, he wheels himself into his classroom where he spends his days alongside his peers- counting, singing songs, painting pictures, learning to share, building towers with blocks and doing everything that a preschooler does. At three, our son, Colin is spilling over with courage and hugs and “I love yous.” For our family and friends, at three, our son, Colin is our very own perennial reminder of the power of love, the sanctity of good health, the veracity of perseverance, and the blessings of compassionate doctors.
Three is thriving because of the care that Colin receives from the C.A.P.E program at Boston Children’s Hospital. C.A.P.E (Critical Care, Anesthesia, Perioperative, Home Ventilation and Extension program) cares for over 300 medically complex patients who are living at home with advanced respiratory support, either tracheostomy or Bipap. Despite the wide range of diseases, disabilities and conditions which these patients face, one certainty remains unwavering. All of these patients live and thrive because of the C.A.P.E program. The professionals in this program are determined to help each patient live his or her fullest life possible, and go to incredible lengths to keep each patient healthy and out of the hospital. Being a C.A.P.E patient has not only saved Colin’s life and our family, but it has given us the confidence and ability to care for our son’s chronic respiratory insufficiency, mitochondrial myopathy and myriad of medical challenges at home.
In the middle of January, when Colin battled a life-threatening respiratory virus that should have landed him back in the ICU, it was the C.A.P.E program's expertise, care and compassion that helped Colin overcome his illness without ever leaving our home. After constant communication with his doctors, endless aggressive breathing treatments and depleting 5 oxygen tanks, we prepared ourselves for another trip to the hospital. But instead of packing our bags, our doorbell rang. Dr. Graham, the director of the C.A.P.E program at Children’s, had been cross-country skiing in a neighboring town. On his rare day off, he took a break from skiing with his daughter to check in on Colin. Still wearing ski boots and ski leggings, Dr. Graham donned his stethoscope and gave Colin a full medical exam. While he adjusted the settings on Colin’s medical equipment, instructed us on advanced care, and sent new prescriptions CVS, our daughters continued painting pictures at the dining room table. The next morning, the entire CAPE team, including Dr. Casavant, NP Julie Shurtleff and respiratory therapist Lauren Perlman revisited our home to follow-up on Colin’s care. By the end of the week, Colin’s health had improved and our family was making plans for our next family ski trip.
From guiding our set-up as a medical home to troubleshooting breathing issues in the middle of the night to coordinating care with Colin’s many other BCH specialists, the C.A.P.E program extends compassionate medical care that goes beyond what seems humanly possible. Whereas other doctors can be hurried to finish a 15-minute well-visit, the C.A.P.E medical professionals take their time with Colin, making home visits to alleviate the challenges of hospital admissions, applauding our son’s latest developments and responding to his medical crises- of which he has had many. As a result of the care and support that the C.A.P.E program provides, instead of spending his days in the hospital, Colin spends them with his family and friends — playing with his sisters, celebrating birthdays and holidays, learning in preschool, skiing in the mountains, splashing in the ocean, boating to islands, swinging on his swings, and living a very full life.
By supporting Colin’s CAPE crew in the Eversource Walk for Boston Children’s Hospital, you will be supporting the families with loved ones in the C.A.P.E. program. You will be ensuring that children, like our son, Colin, continue to thrive at home and that C.A.P.E families' hallways continue to echo with the laughter of children playing with their siblings.
Thank you for your time and your donation, Colin's CAPE Crew