Parenting My Medically Fragile Child Means My Son Needs Nursing Care

Our son, Colin, sings the ABC’s, proudly spells his name C-O-L-I-N, tells endless stories about school and lions and never stops talking. With every breath he uses to vocalize his extraordinary ideas, we are reminded of the living miracle he is. Colin is a typical 3-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 3-year-olds, Colin cuddles under blankets reading “one more story” with his mom, his dad and his two big sisters. For our family, 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 skilled medical care.

Unlike other 3-year-olds, Colin lives every day with the shadow of a rare, incurable and life-threatening disease trailing behind. At 3, Colin needs intensive breathing support and constant treatments in order to maintain his health, to support him through even minor colds and to sustain his growing body. Colin’s highly specialized care plan necessitates consistent nursing attention and constant medical intervention. Colin’s chronic respiratory insufficiency makes him susceptible to collapsed lungs, apnea events and choking on his own secretions. And so, although his days are filled with being 3, they are also saturated with a medical world typically only found in ICUs — deep nasal suctioning, nebulizers, chest percussion vests, pulse oximeters, tube feedings, oxygen tanks and Bipap machines.

At home, our days begin in the dark with machines humming and monitors beeping. While our neighbors are still sleeping and dawn’s early light is barely breaking, we are performing hospital style medical interventions on our son. Before we have finished a cup of coffee, we have assessed heart rates and oxygen stats, started tube feeds, administered a saline nebulizer, snaked a nasal suction catheter down our son’s trachea to remove extra secretions from blocking his airway, commenced vibrations on a chest percussion vest, administered continuous cycles of a cough assist interspersed with deep nasal suctioning and dispensed five syringes of medicine and two syringes of flushes through a G/J tube. By the time the sun rises and our daughters wake up to start their day, we have already accumulated clinical hours in a nursing program from which we never earned a degree. But our medical day does not end there, it continues 24 hours a day, seven days a week. Whereas other parents tuck their children into bed and rest from the day’s activities, throughout the night, we hold vigil over our son’s breathing, monitoring the breaths he takes from his ventilator, suctioning secretions that block his airway and ensuring his oxygen intake stays elevated.

We’ve been plunged into a medical world we didn’t know existed and, although we have excelled at it, we have done so with a reliance on continuous skilled nursing for our son, Colin. I am an English teacher at a high school outside of Boston, and my husband is an engineer in a family-run small business. My academic schooling prepared me to teach Shakespeare and Thoreau and Dickinson; my husband learned the mechanics of engineering. We are not medical professionals. But in order to keep our son alive and healthy, we are forced to become doctors, nurses and respiratory therapists all at once. With the assistance of continuous skilled nursing, we have learned how to keep our son thriving and out of the hospital, and we have continued to be productive members of society and our work environments.

As an English teacher, my job requires I teach students in a classroom, at a school. I cannot work in the home. In our home, my job sustains our health insurance. Our health insurance keeps our son alive. In order for me to work, Colin needs a highly skilled nurse who can suction his secretions, feed him through a tube, and monitor his Bipap — among all of the other nursing duties. We cannot hire a babysitter, nor can we send him to a local daycare. He has only one option: skilled nursing care. When there are inconsistencies in his nursing, my husband and I cannot work, and like many other families in the metro Boston area, we simply cannot afford to not work. Likewise, in order for Colin to access his education and attend preschool with his peers, he needs a nurse who can attend to his medical needs and keep him safe during the day. On the first day of school this year, Colin’s nurse called in sick. Like other school-aged students, Colin was excited to go back to school. His new dinosaur backpack was packed, his first day of school clothes were laid out, but since he had no nurse, he could not go to school.

Currently, there is a dire shortage of skilled nurses nationwide, and a discrepancy in pay and ability between home care nurses and hospital nurses in Massachusetts. As a result of this dearth in nursing, the lives of children like our son, Colin, are at stake.

We adore our family of five, and we live the most fulfilling life that we can. To that end, we have become adept at balancing our son’s highly specialized care with the everyday joys of raising a 3-year-old. We have travelled a long way from the days when Colin’s prognosis indicated we would never hear his voice. And, as a result, we will never stop feeling blessed that Colin asks to read one more book, demands more time on the iPad and tattles on his big sisters. For the gift of Colin’s voice and for his breath which we embrace in benediction, we advocate for our son to receive the skilled nursing care that keeps him breathing, singing and saying. “I love you.” We advocate for all of the the children who grow and learn while their parents keep vigil over their every breath.

We want to hear your story. Become a Mighty contributor here.

Getty image by MangoStar_Studio

Find this story helpful? Share it with someone you care about.

Related to Mitochondrial Disease

A decorative design of a woman's facial profile.

Finding Your Identity When You're Too Sick to Work

When meeting someone for the first time, one of the first questions people ask is “What do you do for a living?” They believe that your career will tell them something about who you are. They might even have an idea of how much money you earn. It’s no secret that society is impressed by [...]

To the Man Who Loves Me Through My Illness

We met in college. Our first date was the day before Valentine’s Day, and you had already remembered my favorite flower after meeting only once before. I hoped you wouldn’t run when you saw my wheelchair. I prayed you would stay after witnessing the intense muscle spasms and pain. I feared you would leave when [...]
Vintage style TVs stacked on one another, in front of a brick wall.

Why People Get Upset By Illness Misrepresentation in the Media

Recently I have read multiple stories on personal blog posts and The Mighty about people being offended by television or movie misrepresentation of their illnesses. Why do people become so angry about such things? Personally, I don’t get upset when television sitcoms make fun of or misrepresent an illness, such as when ABC’s “American Housewife” [...]
sunset over the ocean

What It's Like to Live With Adult-Onset Mitochondrial Disease

Statistics. When I went through my first traumatic experience, I thought since I “became” the statistic that somehow I was immune to becoming a statistic again. Then something traumatic happened to me again. And again. And again. When I was 21, I woke up one day and went to swing my legs out of bed [...]