If I had a mom/wife super power, it would have to be my laid backness. Is that a word? Anyway, I am not a huge planner. I live each day in the moment, and I have a tendency to let go of things that aren’t important. I plan the important things (therapy, doctor visits, advocacy work) but for the most part, we are very relaxed in my house. I used to appreciate this side of myself, until I became Sienna’s mom. There are days I have to fight every urge in me to try and be the cool mom. Occasionally, I have to tell another mom to keep her kid away from my kid. I hear the congested cough that is just a typical cold for your typical kid and my mind goes to sleepless nights, breathing treatments, nasal aspirators, essential oils, and dreaded hospital stays.
Last week, I yelled at a shoe saleswoman. She patted Sienna on the head. I handed her sanitizer and told her to use it before she touched my kid again. She just stared at me. My old self would stare at me too. Get over yourself and your germs, Shannon. Do you think you’re more important than everyone else? Well, not more important, but germs are different for us. I had to let go of that innate laid backness and embrace my uptight germaphobe side.
Sienna is one of the 40-50% of children with Down syndrome that has a heart defect. She has an Atrial Septal Defect or an ASD. It’s a hole in the wall that separates the top two chambers of the heart. This defect allows oxygen-rich blood to leak into the oxygen-poor blood chambers in the heart. Sienna’s right side of her heart is enlarged due to this blood flow.
When Sienna was first born, we were told that her ASD might close on its own. We have since learned that it is on the moderate to large side, so it will require surgical intervention. The goal is to wait for her to be 4 years old. We hope and pray that she will qualify to have the procedure done in the catheter lab, but there is still a chance that she will need open heart surgery.
We have to be on the lookout for signs that she is struggling because the defect can cause pulmonary hypertension, congestive heart failure, and there is an increased risk of stroke. It’s also very important to try to keep her as healthy as possible. If Sienna were to get pneumonia, it could cause an array of health complications, and would require an immediate hospitalization.
A person with Down syndrome is 62% more likely to get pneumonia. They also are more susceptible to illness such as ear infections, tonsillitis, and upper respiratory infections like RSV. Why? One reason is due to abnormalities in their immune systems, usually the T cell and antibody-mediated immunity functions that fight off infections.
Another reason is their low muscle tone. Remember the post I did on hypotonia? As I mentioned, hypotonia can affect anywhere, including the lungs. It can result in difficulty coughing up mucus, which then settles and results in an infection. Sienna’s small passageways in her nose and ears can also make her more prone to infection.
This is why parents of children with Ds may be a tad over protective during cold and flu season. What may be a little cold for your “typical” child can and will turn into something a lot worse for our children with Ds.
When Sienna’s eye starts to goop more than usual and her nose starts to run, I know that it is the beginning of a cold. It never just stays a cold, and it always lasts months. I do everything within my power to keep it from escalating to pneumonia. Every morning and evening, we use a hospital grade nasal aspirator. This little contraption has helped us immensely. We are also a big fan of essential oils, probiotics, and bone broth in this house. Her doctor recently gave us the green light to add Zyrtec to our regimen, which is also helping. Let’s hope our methods continue to work through cold & flu season. I know quite a few parents who have lost their little angels to RSV and these types of illnesses. Please if you are feeling sick or have a cold, stay away from Sienna until you feel better.