In our house, fall means changing leaves, homemade Halloween costumes, and a little nail-biting fear. Respiratory season is upon us, and that always adds an element of dread for families of kids who are medically complex.
Our son Richie has RYR-1 related myopathy, a genetic condition that affects the function of his muscles. Richie has had the gamut of respiratory interventions, from a tracheostomy and ventilator, which he used until he was three years old, to the equipment currently filling the tiers of the respiratory cart in his room: oxygen cannulas, a cough assist machine, a suction machine, a nebulizer, an airway clearance vest, and a bi-pap machine.
Unable to cough strongly enough to clear his lungs, Richie is at risk for lower respiratory infections that can detour quickly into pneumonia and a hospital stay. To keep him healthy during cold and flu season, we work with his healthcare providers to develop and adapt a plan that includes best clinical practice in relation to respiratory care, nutrition, and hand hygiene, along with some home remedies.
Hand hygiene is second nature in our home, as a side effect of having a child who is medically complex. Throughout cold and flu season, we are even more focused on hand washing as a first step in avoiding illness. At school, Richie’s one-to-one nurse wipes classroom surfaces and any items that are shared among students. His nurse washes his hands frequently and encourages Richie’s friends to wash their hands as well.
When Richie seems to be getting a cold, we double his probiotic dose to two capsules a day, and we use anti-inflammatory foods in his blenderized diet. Ingredients like turmeric, oregano, decaffeinated green tea, elderberry syrup, and apple cider vinegar are known to help with illness. Some families also use bone broth. We increase leafy greens in Richie’s diet, and add ingredients like fresh ginger, citrus, and onions.
Because Richie tends to lose weight quickly when he is sick, we increase his calories by adding healthy fats like coconut oil and avocado. We work with Richie’s dietician to include ingredients that are safe for him and support his health. Our philosophy on food as medicine has kept Richie healthy and growing well over the years, and we continue to use diet as a way to maintain his health.
Our home remedies are small ways to support Richie’s respiratory health and the health of our family. We swear by essential oils like Thieves Oil (rubbed on his feet) and eucalyptus, peppermint, and other oils, which we use in diffusers throughout the house. We also use a “breathe better bath,” a warm Epsom salt bath with essential oils. As always, we talk to Richie’s doctors about essential oils and herbs in the same way we would talk about other medications to ensure that they are okay for him to use.
The respiratory care plan for Richie changes immediately when he shows signs of respiratory illness such as a cough or a runny nose. Normally we do two respiratory “treatments” each day, which include nebulizer medications, the airway clearance vest, the cough assist machine, oral suction, and oxygen if needed. With illness, we start doing these treatments every four hours, adding the cough assist every 15 minutes or more if he needs it. We also call the pulmonologist to discuss Richie’s symptoms and oxygen saturation levels, and we get the doctor’s recommendations for next steps.
Usually, if Richie’s condition gets worse over the next day or two, we increase the frequency of the treatments to every three hours. We even lay him at an angle with his head down to help drain fluid from his lungs. If he doesn’t show improvement within 15 hours of the more frequent treatments, it’s time to go to the hospital. We have a strong and trusting relationship with Richie’s pulmonologist, and we share information and follow his recommendations. We keep track of Richie’s vital signs and symptoms in a notebook, and we take the notebook to the hospital if we end up having to go.
Going to the Hospital
We have worked with Richie’s doctors to determine when we should take him to the hospital after trying to manage a respiratory illness at home. By the time we are headed to the hospital, we are all pretty tired from the vigilance and the increase in treatments. We call ahead to Richie’s pulmonologist, and we call the emergency department at our hospital to notify the attending pulmonologist that we are coming. This allows them time to review the details of Richie’s long medical history before we arrive and make a plan on whether and where to admit him, if needed. Hospital stays, even when quick and pleasant, can be disruptive to the routine, educational goals, wellness, and finances of the entire family, so avoiding hospitalization is always our goal.
We keep a bag packed for the hospital during this time of year. In the bag are clothes for all of us, comfort items and activities for Richie, and the notebook used to track his condition. We also keep some of his blended diet in the deep freezer so it’s ready to go to the hospital with us. When Richie is admitted to the hospital, he is usually admitted to the ICU because of his complex medical history, and he is typically there for at least a few days.
Keeping him out of the hospital is a labor of love, and the more effective we become at it, the better all our quality of life becomes.
Like most parents of complex children, we greet the cold and flu season with a sense of dread. However, having a plan of action and a set of tools helps us to feel more in control and prepare to keep Richie well.