Just over 23 years ago, my son Cody was born a healthy baby, but at just two months old, he contracted bacterial meningitis and became extremely ill. After a three-week hospital stay, we were able to bring Cody home — but many of his systems were permanently affected, and various life-long complexities would continue to surface over time.
While we don’t let his medical needs define who he is or who our family is, they did lead to a major change for me both personally and professionally — and I haven’t looked back since.
Learning to navigate a new life
Very early on in Cody’s medical journey, I realized it was crucial that as his advocate, I knew how to navigate this complex system and understand the terminology that healthcare professionals were using to explain his medical needs and conditions. Secondary to meningitis, Cody is visually impaired, wheelchair dependent, G-tube fed, and has hearing loss, hydrocephalus, and chronic lung disease, amongst other diagnoses. At the beginning of this journey as a mom of an infant with medical complexities with no medical background, that was a long list to grasp.
Despite this drastic shift in how we envisioned our lives and Cody’s future, we knew one thing — we wanted to provide him with the care he needed and optimize his physical health while also giving him opportunities to live as normal of a life as possible in his community.
A career founded in support and experience
Nearly 20 years later, I made the decision to take a big leap in my career and left my job as a ticket broker to become a respiratory therapist (RT). I saw the vital role that respiratory therapists have played time and time again in showing me how to optimize Cody’s lung health and help get him healthy enough to be discharged from the hospital. I realized this was the path that I had always been meant to take.
I worked in the hospital setting after finishing RT school. After years of personal experience with DME companies who were providing care for Cody, I recently made the switch to home care, and began working as a respiratory therapist with Pediatric Home Service (PHS). While my home healthcare company has been caring for children who are medically complex in Minnesota for nearly 30 years, they have now expanded to serve all of Wisconsin as well. I am so passionate about my role in bringing pediatric-focused respiratory therapy and enteral nutrition to this population. This career change has truly brought my journey of mom-turned-healthcare professional full circle.
Giving families confidence
As an RT and a mother to a child with medical complexities, I have the opportunity to help families who have found themselves hesitant to leave a hospital filled with medical staff who can jump in to provide care at a moment’s notice. They may be lacking self-confidence in this new reality, and unsure of what the future holds for themselves and their child.
I was once that parent, too. But over 23 years later, Cody is an incredible young man who thrives at home and makes me smile more than anybody else can. Yes, he requires round-the-clock care and is still extremely complex. But he also loves to be in the middle of commotion and activity, listening to live music, and going for walks through the park. He’s been swimming with dolphins, parasailing, jet skiing, and done just about any other experience with his three siblings. We’ve done everything we can to make his life as normal as possible — and that is all because of home care companies who help keep patients like my Cody at home.
Today, my focus as a respiratory therapist is to educate parents of children who are medically complex on the cares they will provide, and help instill confidence in them — because I know these parents are more than capable of managing their child’s healthcare. I visit them at home to make sure their durable medical equipment is set up correctly, ensure their child is doing well, and that they are prepared for success. I reassure them that with any questions, concerns, or confusion they have, our homecare company has staff available 24 hours a day, 7 days a week.
I wear multiple hats into my patients’ homes — healthcare professional, special needs parent, advocate, cheerleader, optimist. I am rooting these children on every step of the way — because this is what I know I needed at the start of our journey with Cody. Now I can build on my experiences to help lift other families up and as they envision what their own future holds.