Right now, I canât turn on the television or look at my phone without seeing a story about COVID-19, the new strain of coronavirus with symptoms like dry cough, fever and shortness of breath.
The public is preparing to hunker down and wait out what will likely be a full-scale pandemic.
The CDC [Centers for Disease Control and Prevention] has shared specific guidelines for the healthy public, like diligent hand-washing and staying home when feeling ill, yet people have made mad-dashes for hand sanitizer, face masks and other medical items that are so very valuable to the medical field. Unfortunately, this has made most of these items unavailable for purchase in places theyâre usually available (like Amazon and Target) — not to mention hospitals have had to lock down these supplies up because people are literally taking everything that is not nailed down.
When people stock up on items like hand sanitizer and face masks, it cuts down on the life-saving supplies families like mine depend on.
Emergency preparation for sickness is nothing new for my husband and me. We are the parents of a micropreemie. My daughter Lily was born at 24 weeks gestation and spent eight months in our local NICU. While we have been home for just shy of one year, she still has several complications stemming from her time in the hospital — she is ventilator-dependent with a tracheostomy, g-tube, and supplemental oxygen. Her early birth did not allow for the time in-utero that she needed to build the same immunity as a full-term baby. Because she missed this critical window of development, she is immunocompromised.
From October through April each year, we retreat into isolation for Lilyâs safety.
A virus as simple as the common cold could be extremely dangerous for her respiratory system, even fatal. We have only 13 approved visitors each winter — her developmental therapists, nursing support and our own parents. We do not take her out of the house; her doctors check-in via phone and we rely on grocery and prescription delivery. My husband naturally encounters very few people at work, but when a coworker is ill, he works from home. We spend the night shift (Lily requires around-the-clock care) sanitizing all hard surfaces, door knobs, toys, linens and her medical equipment. To hear of the precautions suggested by the CDC makes us giggle a little bit because itâs how we live our lives day after day. We must live like this because for our family, itâs a matter of life and death.
Just like hospital staff, we run our home-based intensive care unit (ICU) using many required medical supplies.
Some are provided by our durable medical equipment supply company (DME), like suction catheters, oxygen tubing and coban, but we are responsible for finding and purchasing many other items like hand sanitizer, latex gloves and hospital-grade antibacterial/antiviral cleaning products.
As the nation begins to panic, these items that we so desperately need in order to function on a daily basis have become scarce.
While I understand why the healthy population is stocking up on cleaning supplies and preventative items, families like ours need the same supplies just to survive. We have recently found ourselves trading boxes of face masks for bottles of Purell, as all of our medically fragile family friends are in the same position. We are trying our best to plan ahead, but as stores quickly lose stock and people hoard items to resell at an upcharge, we have begun to scramble.
Our reality is filled with copays for specialist visits and therapy appointments, medical and therapy equipment and supplies and so many other expenses above and beyond that of a typical family.
Just the idea of shelling out 100 dollars for two bottles of hand sanitizer when we typically spend nine dollars is unfathomable.
We have worked hard to save an emergency stash of many of these items, but given the unpredictable nature of this virus, we can just hope that our stockpile will be enough to see it through.
Please, as you shop in the coming weeks, think of our family and others like us, and consider reducing the number of each item that you purchase so that we can find them too. Our childâs life depends on it.
This essay was republished with permission and was written by Jess Wolff. You can follow her journey on her Instagram page.
