The tapestry of the life of a medically complex family

“Lockdown”

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As parents, we all do our best to protect our children. We use outlet covers, remove knobs from gas stoves and install carseats so tight paper cannot slip beneath the base. This morning my 5-year-old bumped her head trying to surprise me by re-making her bed because I told her we were going to do that this morning. With all we do, we can't keep them safe from every bump or bruise- fortunately Momma's magical kiss was all that was needed to heal this one.

Being Mom to nearly 7-year-old twins with trachs, and a medically complex 5.5 year old, there are things worse to worry about than a bruise on the forehead or a scrape on the knee. A simple cold in another child their age could be an illness severe enough to put them all on oxygen, develop into a severe pneumonia, place us inpatient across 2 rooms at our children’s hospital. Our last inpatient stay was Christmas Eve 2011, as my youngest began requiring oxygen at home to keep her oxygen saturation within the acceptable range.

The way we avoid the hospital is to work to avoid contact with people who may become ill and share that illness with us. From September through May every year, we live in “Lockdown”. It is the primary reason I homeschool. It is why the OT & PT see my kids first, and cancel when they are exposed to known Flu or RSV or if they are coming down with something or “feel a tickle” in their throat.

I realized in describing it to our neurologist that people don’t understand the lengths we go to as a family to avoid illness. They see kids who appear medically frail but who have infrequent hospitalizations, who maintain health throughout much of winter. They see them cone to clinic wearing masks, in their strollers, with a Mom who requests exam rooms be wiped down in her presence. They have no idea that this is the tip of the iceberg.

My twins with trachs turn 7 on Saturday and have been to the grocery store less than 7 times. They stay home with a nurse or I shop online to avoid exposing them to a grocery cart. My youngest sits in the cart still, but only after I wash every surface she might touch with wipes rated to “kill the flu virus”. We have not been to a gymnastics class since my twins’ first summer home- the summer we spent 2 weekends of every 4 inpatient.

With family parties in winter, we canvas family members the week prior to see how everyone is feeling. We cancel if anyone sick is planning to go- and almost NEVER attend an “in-law” inclusive party- even in spring. We celebrate our own holidays and birthdays with small gatherings at home- including one set of cousins who are well one week, making time when the others are well to celebrate again.

Vigilant? Yes. Extreme? No. My children have a history of adjoining rooms in more than one hospital in year’s past. Being inpatient 10 days after Thanksgiving, 8 days after Christmas, the week after a visit from the birth family aunts an uncles- a hard lesson has been learned and etched in our experience. “Lockdown” is the way we ensure we can be together as a family, home & safe from the illnesses contracted as a result of an inpatient stay. My kids continue to experience a rich life of playing in snow, riding bikes and building blanket forts. They just do it ‘different’, not ‘less’.

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