Please Wash Your Hands: Life with Kids who are Medically Fragile

by Michelle Harris

So many exceptional children suffer from medical complications that make catching a “simple” cold anything but simple. Yet, when parents ask family and other care providers to wash and sanitize their hands when they enter your home, you would think we are asking them to chop off their hands instead!

I have a standing policy when I have therapists come to my house that if they have visited a house where someone is sick, DO NOT come to my house! This includes someone with a simple cold. If the therapist even THINKS they MIGHT be sick I do not want them to come to my house. I do not allow the Occupational Therapists (OT) to bring in ANY item that has been used by someone else earlier in the day, and I offer to buy any game, or other items they tend to use with my children while they are in my house.

Why am I such a nut? Why do my children call me a germaphobe during Cold, Flu, and RSV season? It is due to Joseph!

Joseph’s Story

Joseph is Baby D out of a set of surviving quadruplets I had in 2007. The first two years of his life were terrifying, and he almost died twice after coming home from the NICU at a mere four pounds. Joseph has issues with growth, so he is a tiny guy at almost 11, at less than 4 feet tall and weighting about 44 pounds (he stumps the nutritionists). He has a narrow trachea (stenosis), tracheomalacia (due to being intubated for too long as a preemie), and scar tissue from the removal of a subglottic cyst that had blocked 80% of his airway (also from being intubated).

When Joseph catches a “simple” cold, it can turn into a life-threatening condition. When he gets a respiratory illness, it can inflame the scar tissue in his throat. This, in turn, blocks his throat, and when you add the narrow trachea and tracheomalacia into the mix, it cuts off his airway.

Several times I have had to run him to Urgent Care in the middle of the night due to his labored breathing. He cannot have the typical medication you give for asthma since bronchodilators usually do not help and may worsen tracheomalacia. I have to make sure the doctors take the time to listen to me, and to listen to Joseph’s chest. They need to realize he is not having lung issues; instead, he is having an issue with his trachea, and he needs appropriate steroids to lessen the inflammation in his trachea.

Protecting Children

So am I a germaphobe? Yep, and proud of it! I will do what I need to do in order to protect my son. So when you meet a parent with a preemie or a child with medical complications, and the parents tell you to wash your hands, understand it has nothing to do with you. It is just a parent’s desire to protect his or her child(ren)!

So how do you know it is safe to visit? It can really hard to know if it is safe to visit during cold, flu, and RSV season. You can be contagious with these illnesses and not even know you are sick yet.

When we had the rare visitor during RSV season when the babies were born, we would have them put on a hospital gown over their clothes and put on a facemask after they had washed (for two minutes) and sanitized their hands. Did it seem extreme? Yep! Did we have many visitors? Nope!

However, I did not care. I saw this as fighting for the lives of my children and I made no apologizes for being hyper-vigilant. People can be contagious with an illness before they even show any symptoms. Even after symptoms develop, you should wait TWO WEEKS before attempting a visit to make sure you are completely over your illness.

Illness When You are First Contagious When You are No Longer Contagious
Cold 1-2 days before symptoms appear Up to 2 weeks after exposure
Flu 1 day before symptoms appear 5-7 days after you get sick with symptoms
Stomach Virus Before symptoms start Up to 2 weeks after recovery, as many viruses continue shedding in the stool

Adapted from Healthline

I hope this helps you to understand why parents of preemies and other kids who are medically fragile seem a bit extreme. It is not that they do not want to be friends. It is not that they do not want to be social. They are literally worried about the life of their child! So be kind and understanding of their crazy hygiene practices. If you visit, please immediately wash and sanitize your hands before you touch anything in the home to make sure you help keep everyone healthy.

Author: Michelle Harris • Date: 10/11/2018

About the Author

Michelle Harris, founder and CEO of Arizona Exceptional Students Association (AESA), has been an educational advocate for over 10 years. She is the mother to six including surviving quadruplets. Her compassion and frustration with doctors led her on a special-needs quest. You can read her other posts at www.aesa.group, and you can also find us on Facebook.

Facebook Comments