Our son, Colin sings the ABC’s, proudly spells his name C-O-L-I-N, tells endless stories about school and lions and simply never stops talking. With every breath that he uses to vocalize his extraordinary ideas, we are reminded of the living miracle that is our son. Colin is a typical four year-old, testing his limits, seeking his independence, and overflowing with imagination. At home, our hallways echo with belly-giggles and laughter and “let’s race” as Colin wheels after his big sisters. At school, Colin spends his days learning besides his peers- painting, counting, building and singing preschool songs. And at the day’s end, like other four year-olds, Colin cuddles under blankets reading “one more story” with his mom, his dad and his two big sisters. For our family, at four, 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 blessing of the Boston Children’s Hospital CAPE (Critical Care, Anesthesia, Perioperative, Home Ventilation and Extension) program.
Unlike other four-year olds, Colin lives everyday with the shadow of a rare, incurable, and life-threatening disease trailing behind. At four, Colin needs intensive breathing support and constant breathing treatments in order to maintain his health, to support him through even minor colds, and to sustain his growing body. And so, although his days are filled with being four, they are also saturated with a medical world typically only found in ICUs- deep nasal suctioning, nebulizers, chest percussion vests, pulse oximeters, feeding tubes, oxygen tanks, and Bipap machines. To people outside of the medical world, Colin’s daily medical interventions are daunting, challenging and simply puzzling, but to us, and to the Boston Children’s hospital CAPE program that supports us, Colin’s intensive respiratory needs are so well managed that Colin is thriving.
We first met Dr. Graham, Lauren Ladoulis Perlman and the CAPE program 4 years ago when Colin was a baby in the NICU at Children’s. Dr. Graham was the first doctor that gave us hope that Colin would live a life outside of the hospital, and for the last 4 years, Colin has been living a full life— loving on his sisters, going to preschool, learning to read, playing with friends, skiing, boating, swimming and loving every minute of every day, even the hard days. And it is on these hard days, that we feel the blessing of the CAPE program. This past February vacation, Colin suddenly came down with the flu while we were on vacation in the White Mountains. He fell into respiratory distress, required significant respiratory support and his heart rate skyrocketed into the 200s. At 3am, when we had reached our threshold for medical interventions, it was Dr Graham, who, once again, answered our phone call and talked us through how to best support Colin’s respiratory needs. By daybreak, we traveled home to Boston Children’s Hospital and Colin was admitted to the ICP. With guidance from the CAPE team, Colin was immediately treated for the flu, pneumonia, collapsed lungs and a GI infection. Two weeks later, he was skiing again in the White Mountains. Colin is not alone in his medical journey.
Today, CAPE 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 CAPE 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 CAPE 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 chronicle respiratory insufficiency and myriad of medical challenges at home. 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 CAPE 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 CAPE 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.
There are no words to explain what the CAPE program means to our family, but there is one happy, loved, wicked smart, funny, social, sweet, lovable and totally kick-ass 4 year-old that represents how much the CAPE team means to us.
This year, we invite you to help children thrive at home with their families. By supporting Colin’s CAPE crew in the Eversource Walk for Boston Children’s Hospital, you will be supporting the families in with loved one in the CAPE program. You will be ensuring that C.A.P.E. hallways echo with the laughter of children playing with their siblings.