When The Lights Go Out




The Weather Channel buzzed about it for days. Impending severe weather may produce situations where power may be lost. It doesn’t matter where you live; it happens to everyone.

In most cases, losing electricity is a small inconvenience that can be fun. Electronics and TVs don’t work and if it’s nighttime, it’s dark. Families can enjoy a quiet candlelit evening like they did in the old days.

If, however, there is a family member that requires electricity to power life-sustaining equipment, a small inconvenience can quickly become a life or death situation.

Power companies don’t guarantee service. When a person requires machines to live, all the power company does is inform the customer through an automated phone call that power may be lost.


The following scenario is an inside look at what really happens during those hours of powerlessness.

Immediately, the worry clock starts ticking.

We have six hours until the quiet hum of the ventilators become silent. The most needed piece of equipment in our home will cease to provide breathing for our kids. Without it, they would die.

There are two hours until the pulse oximeters stop alerting us to low oxygen levels in the blood. If MaryEllen’s and Kevin’s lungs are not clear or mucous become lodged in their airways, their bodies will not be able to maintain sufficient oxygen levels, and they could die.

We wouldn’t be able to use the suction machines after a few suctions. Mucous in the airway becomes thicker and more difficult to cough up, resulting in a very dangerous, life threatening blockage.

Our nebulizers that push aerosolized medications into the lungs, don’t have battery backup. The medication would have opened up the airway so that the lungs and body stay oxygenated.

The feeding pump  that pushes formula through a tube at a designated rate and volume will stop working in four hours. After that, there’s no food.

Powered beds and the ceiling lift will stop working after a few hours. Subsequently, there will be no position changes or getting out of bed. Muscles will start to ache and skin will be at risk for breakdown.

If it’s dark out, we have to care for and assess MaryEllen and Kevin with a flashlight. We wouldn’t be able to see color changes that could be indicative of low oxygen levels, our only way to know without the pulse oximeter.


As other families play Yahtzee by candlelight, we roll the dice and hope that our electricity comes back before we need a trip to the hospital. And though it sounds like a good solution, hospitals are a breeding ground for antibiotic resistant bacteria that can’t wait to infect a compromised vent patient.


So what are we supposed to do?

According to the automated phone call from the power company, we are instructed to do the following:

1. Be prepared

Besides having a functioning generator, what can we do to be prepared? We can’t just pick up and go.

2. Notify friends and family

How does calling our friends and family help at all?

If you are a friend or family, please tell me, what would you do if I notified you?

The conversation would go like this: “Hey, so our power’s out. I’m just letting you know, well, because the power company told us to.”

After the shock wore off, what would you say?

I can imagine the silence at the other end of the line.

Aren’t you glad we never actually call you?

3. Call the local fire department to alert them of our needs

They already know us.  Families like ours are usually known to the local ambulance companies, unfortunately.


It is a flawed system. When the power goes out, families like ours suffer. Even though we have to fill out mountains of paperwork to get on a priority list, we are told that there is no priority for people like us and that we should have been prepared. Having a working generator is not always the answer. Roads have to be passable to get a fuel truck in for deliveries. Phone lines have to be working in order to contact fuel companies.


Know that we would give anything to not need life support and instead sit and play Yahtzee while the candles flicker in the background.








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