“I Lost Power, Now What 😱” Chapter 92
"Beep, beep, beep" - the alarm to my ventilator was alarming. It was 10:00PM and I was laying in bed. Laura jumped up to see what it was. The monitor said "internal error, service required." I was breathing fine and the alarm cleared, so we decided to call in the morning and laid back down. One hour later, the alarm went off again and we cleared it again. On the third time, the alarm sounded and we got worried. What will we do if it stops working? We didn’t have a backup ventilator, nor did we have a plan. All we had was an Ambu Bag if the ventilator failed, and that was a bad solution. At midnight, Laura called the service number and prayed someone would answer. At 2am, a representative showed up and replaced the ventilator.
This really got us thinking about our emergency plan. Our plans before ALS were simple: In the event of fire: grab our pets and run out the nearest exit or window. Power outage: light some candles, eat a lot of ice cream, and hope the power turns on before the phone dies. Dress warm and start a fire in the winter and get naked in the summer. Storms: batten down the hatches and get away from windows. Unless, of course, you are like me... Then you go outside and take video.
After the night of the ventilator issue, we sat down and worked on our emergency plan. We started asking ourselves questions, and spent time understanding the equipment capabilities.
What will we do if the power fails? After checking all equipment needing power, we listed priorities: ventilation, suction, wheelchair, communications (eye gaze), and ceiling lift. The ventilator has about 12 hours of battery and we also have a second ventilator now. We rotate ventilators and keep one plugged in at all times. The suction machine will only last about 30 minutes on battery. We have a second one, but it doesn’t have a battery back up. We also had a power car adapter added to the wheelchair in order to plug both the ventilator and suction machines into it if needed. If the power does fail, the ambu bag can be used to provide air and clear my trachea. This would also require a 911 call.
The wheelchair battery will last over 24 hours depending on how it’s used. Driving and plugging in other devices will reduce it. If the battery dies, the wheelchair has a release button so it can be pushed manually. This is a last resort because the wheelchair weighs 405lbs alone, and my fat ass weighs 167lbs. Pushing 570+ lbs ain’t easy.
The eye gaze battery lasts about 8 hours and can also be plugged into the wheelchair. If it fails we developed a system using yes or no questions and blinking. Finally, the ceiling lift has a backup battery life around 4 hours, and luckily we have a Hoyer lift as a backup. Everything gets plugged in at night to ensure the batteries stay charged.
Having these plans is all good for a power outage, but what happens during a fire if I have to get out? Honestly, I expect my family to get out if the fire is really bad. I have a filtered ventilator and would just wait for the fire department. If they have a chance to get me, they will grab the ventilator and carry me out. In case of severe weather, we will move into the hallway away from windows.
Finally, we are blessed to have a mobility van. The van has both 110 and car plug outlets we can use to plug anything into. If we need to, we will move into the van for shelter.
Here are a few more tips we use for both non- and emergency situations.
Have a go bag ready with essential supplies for your PALS. Food, water, clothes, medical supplie, extra trachea and feeding tubes.
Have information written down to give to emergency services when they arrive. This will allow you to ensure everything they need is answered. You will need your PALS name, age, list of medications, any allergies, they have ALS and other conditions. For instance I cannot communicate without my eye gaze, but can answer yes or no questions. I have no control of my head and limbs,
Contact your electric company and register with them you have a patient with medical equipment that requires power. When our power goes out our house/block has priority. Your neighbors can thank you later. The last time we lost power the electric company called and checked on.
Living with ALS already sucks and is a lot of work. I pray you will never have to deal with an emergency, but if you do I hope this post helps you be prepared.
Love and Blessings
I love to read your comments or emergency tips you may have, so please rate and leave a comment below.
Figuring out what to do in an emergency was an exercise. My husband is trached and vented, has a feeding tube, an ostomy, and is bedridden. We do have a PWC with a power pack for the Trilogy, a portable oxygen concentrator with an 8-hour battery that we used for two days when our big oxygen concentrator went on the fritz, plus eight 4-hour oxygen tanks, 2 suction machines with backup batteries (life unknown), a second Trilogy that's always plugged in (both have backup batteries). We also have 4 UPS battery backups that will run for about an hour each...but, we have a Generac that will run for at least 4 days and power the whole house. With Hurricane Debby,…
Good thing you've got an Army career of experience to fall back on when it comes to planning for these kinds of contingencies. Just curious, do you also have a small back up generator that can be run from outside the house and could run some of the battery back up equipment you've described in your blog?
Do a GO FUND ME for a generator!!!
Do y’all have a backup generator? We had one done along with the SAH renovations. And, I understand you can get one with one of the grants, an independent loving one I think.