How To Protect Your Medically Fragile Child

My oldest son was born 10 1/2 weeks early and has always been a medically fragile child. Honestly, it was something we didn’t even give a lot of attention to due to everything else that was going on with him. Until COVID-19 hit.

When COVID-19 reached the U.S., we were in the middle of a month-long stay in the hospital. The only thing I thought was, ‘I hope we get home before it gets really bad’. Luckily, we were released to go home at the end of that January.

Pandemic decisions

Once we settled in though, my husband and I had to decide, what if anything, the pandemic was going to change for us. We now had our oldest recovering from emergency surgery and I was recovering from a TBI (don’t ask, it was stupid…), our house is connected to my in-law’s house and they both fell into the high-risk category.

The obvious thing was everyone had to wear a mask when outside the home and our two support workers had to wear a mask when they were in our home but we really didn’t know what more should or could be done at that time.

Here are some tips that I have gleaned during the pandemic.

Exposure prevention

If you have support workers or any visitors come into your home, is there a protocol you want them to follow such as, wearing freshly laundered clothes and leaving their shoes on the front porch?

Some families have everyone entering their home, sign a visitors log.

In my home, all support workers must take their temperature at the beginning of their shift, as well as my son’s. I don’t require them to log it anywhere but they need to let me know if it’s elevated at all.

Think about vaccination status. Does everyone entering your home need to be fully vaccinated and do you need proof? This can be very important because not all medically fragile people can be vaccinated themselves.

Disinfect everything…frequently

Hand sanitizer: use it and frequently!

Clean all those high tough areas in your home; doorknobs, drawer pulls, fridge doors, faucets, toilet levers, bathtub faucets, car door handles, coffee pot. The list goes on and on. If you use support workers in your home, most of the time, helping you do this can be part of their job if they clean the areas that their client uses frequently.

Disinfecting wipes & spray. These are great to help you sanitize. However, if your medically fragile family member is on a ventilator, or has respiratory issues, allergies or sensitivities, be sure to use appropriate products that won’t harm them.

Outside the home

Keep them at home as much as possible. Try to limit their contact with people who live outside the home. Hard to do if you use support workers but do the best you can.

If you have to take your loved one outside the home, they may need to practice wearing a mask. Discuss with their doctor whether it is appropriate or necessary for them to wear a mask in the first place. My son has a tracheostomy and most places we take him to still want him to wear a mask. Makes no sense to me.

When going to appointments, try to plan ways ahead of time to limit contact with strangers. Should your loved one remain in your vehicle while you get them checked in? Is there a certain corner of the waiting room that people tend to avoid?

Talk to your doctor and see if he can arrange to have you taken to an exam room right away so you don’t have to wait in the reception area.

Virtual appointments! This is the best way to protect your loved ones and I hope they stick around after the pandemic.

Bring your own hand sanitizer. Public sanitizer stations are notoriously wobbly and people put their hands on them to hold them still. You have now been exposed to everyone else’s germs.

If your child uses a stroller, buy a stroller rain cover that is see-through but covers them up and protects them from strangers’ germs. They are usually pretty inexpensive.

When caregivers get sick

If you use support workers to help to take care of your medically fragile child, have a protocol in place. This way, if they come down sick, you will have a plan in place. When do they need to leave? When they don’t feel good? Is it when they have a temperature over 100? Is it when they have a cough or are nauseous? Think hard about this and maybe even discuss it with your doctor.

If someone has been sick but is ready to come back to work, what are your requirements for that? Do they need to be symptom-free for 2-3 days? Do they need to be fever-free for a certain number of days? A note from their doctor? A negative COVID test?

Germs in the school setting

School is a tough one, even before we had a pandemic. Kids are notorious for spreading germs among themselves and then bringing them home. Because of this reason, those of us with medically fragile children will sometimes choose to homeschool versus having our child exposed to the virus de jour.

There are pros and cons to each side of that decision but that is a conversation for another day. Homeschooling can give you control over the number of kids and germs that your child might be exposed to. This reduces the risk of yet another illness.

Last word

People can call us crazy and germaphobes but we are an expert when it comes to the risks we run with our medically fragile child and exposing them to germs. Trust your gut, is what I say. I try to not let C-Bear’s medically fragile status isolate us at home, but I am aware of the risks we run when leaving the home and have plans in place to minimize his exposure to anything.

Be prepared, be aware but also be a part of your community. Community looks out for one another, and that is what we all need.

Other articles you might be interested in:
Creating Memories When Your Child Has A Disability
One Page Profiles In Home, Medical and Mental Health Settings

Other information:
Illinois Dept. of Public Health
Center For Disease Control (CDC)