Surviving a Power Outage with Complex Medical Issues
Almost every part of the country has experienced severe weather-related events in the past year, including damage from snowstorms, thunderstorms, hurricanes, or tornadoes. In many cases, power was lost for an extensive period of time, sometimes as long as two weeks. While neither severe weather nor power outages can be predicted with any great certainty, there are a number of steps you can take in advance to minimize the effects of a power outage on your child and family.
Step 1: Notify the Authorities
If your child with complex medical needs relies on medical technology on a daily basis, you need to notify your utility companies and local emergency providers. Most utility companies, particularly electricity suppliers, have plans in place and standard application forms for individuals requiring life-supporting medical equipment. In my state, for example, the electricity provider requires a letter from a doctor stating what medical technology is used. The company then places your name on a registry and tags your meter to prevent sudden disconnection. While the company here does not guarantee priority restoration, our experience has been that they will make a strong effort to prioritize your repair whenever possible. My daughter’s Medicaid waiver also notifies all utilities of her medical technology on our behalf.
The following are some of the companies and groups you should consider notifying in advance:
- Electricity supplier
- Gas supplier
- Water supplier
- Telephone providers, including landline and cell providers
- Division responsible for snow removal and/or tree removal (often Street or Sanitation department)
- Local fire department, ambulance, and/or paramedics
- Local police department
If a severe storm or other weather-related event is anticipated, it may be wise to remind your local fire department or paramedics in advance of your situation.
Step 2: Prepare for an Outage
There are several standard measures that any individual should take to prepare for a power outage. The Red Cross and other organizations recommend that you have the following on hand before any outage:
- Ice or ice packs
- Thermometer (for checking food temperatures)
- Water—one gallon per person, per day; two week supply
- Food—non-perishable, easy-to-prepare items, two week supply
- Flashlights (NOT candles)
- Battery-powered or hand-crank radio
- Extra batteries
- First aid kit
- Medications—seven day supply if possible
- Medical items
- Multi-purpose tool or tool set
- Sanitation and personal hygiene items (toilet paper, paper towels, etc.)
- Cell phone with charger
- Copies of personal documents (medication list and pertinent medical information, deed/lease to home, birth certificates, insurance policies)
- Family and emergency contact information
- Extra cash
- A full tank of gas in your vehicle
- Generator if possible
Ideally, all items should be kept together for quick access or in case you need to evacuate.
It is also worthwhile to spend some time planning in advance for evacuation if that becomes necessary. You may want to identify a hotel in the immediate area, as well as one further away if your local area is too affected, that can accommodate your child’s needs and your family. It is also wise to locate both a local hospital and one removed from the immediate area (for large power outages) in case your child will require hospitalization.
In the case of a longer outage, you will need a vehicle that can transport your child and his/her medical equipment and supplies as required.
Temperature fluctuation due to power outages can be a major problem for some children. Without a generator, neither heat nor air conditioning will be available. Some families may be able to heat the home with a wood stove or fireplace. Extra blankets will be helpful during winter power outages. Cooling vests that use ice packs may help during warm-weather outages. If the temperature is not acceptable for your child, you will need to evacuate.
Step 3: Prepare Your Medical Technology and Supplies
In general, it is wise to always keep two weeks of all medical supplies necessary in the home. This will give you a buffer in case your supplies are unable to be delivered due to a storm or other event. A good home health company will be more than willing to provide extra backup supplies. If your company is stingy, try to save any excess supplies you receive to build up a buffer. Don’t forget things like diapers, extra water for mixing formula, and other non-medical essentials.
It is also wise to have two weeks of medication on hand. This is often a challenge for families, since many insurers will not allow you to refill prescriptions until three days before they run out. Refill as soon as possible and try to build up as much of a supply as you can. Remember that your local pharmacy may be unable to dispense medications if they have a power outage or storm damage, so it is best to have a good supply of medication on hand.
If your child is on a special diet or formula, make sure you have a two week supply of a shelf-stable version of the diet or formula.
Each piece of medical technology has specific recommendations as listed below.
Most feeding pumps need to be recharged after 12-24 hours. If your child can handle bolus feeds, all you will likely need in a power outage is some syringes and formula. Children who require continuous feeds can use gravity bags in an emergency. These bags have a sliding clamp that allows you to adjust the rate, and can deliver relatively slow volumes of feeds. They should be available from your home health company. For children on J feeds who need slow, consistent feeds, it may be wise to invest in a DC to AC power inverter. This will allow you to charge your feeding pump using a vehicle. Unless you are driving around, this is not particularly practical, however, especially if you only have one feeding pump. If you are able to afford one, a small generator may be of value.
Most ambulatory intravenous pumps can run on disposable batteries if necessary. Have a two week supply of batteries on hand at all times to power your pump. If your pump normally runs on rechargeable batteries, request that you have a disposable battery pack that can be used with the pump in an emergency situation. Syringe pumps typically only run off of rechargeable internal batteries, so it may be of value to have a DC to AC power inverter that will allow you to charge the pump in a vehicle. Most ambulatory pumps can now run low volumes equivalent to a syringe pump, so this may be a better option for longer-running medications. Faster-running medications can always be given slowly as a push if necessary, or be given using elastomeric pumps (such as the Eclipse Infusion System), which require no power.
Children who use an oxygen concentrator will need backup oxygen tanks in the home at all times. It is wise to have at minimum one large M size tank. If your child requires more than 3LPM, having two M tanks on hand is advised. A selection of smaller D or E tanks is also recommended. Children who require oxygen around the clock will very quickly run out of supply. If you can afford it, a generator will definitely be helpful. Unfortunately, an oxygen concentrator requires quite a bit of power (equivalent to a small air conditioner), and it can be costly and difficult to run off of a generator. Portable concentrators, which use replaceable battery packs, may be an option for some children, as these can last for quite awhile if you have multiple battery packs. Most can also be plugged into a DC outlet in a vehicle for recharging. Liquid oxygen is another option that lasts somewhat longer, but many companies are no longer offering oxygen in this format.
Children who require suctioning typically use suction pumps with internal rechargeable batteries. Children who are suctioned infrequently can run several days on one charge, but children who require frequent suctioning usually only have 12-24 hours of charge. Most common suction pumps come with or have available a DC (vehicle) charging cord, which will allow you to recharge the pump in a vehicle. As a backup, you can obtain a manual suction pump. These tend to come in two forms, either as a hand-powered pump, or as a vacuum that uses the suction of a caregiver’s mouth to remove secretions.
Most nebulizers work off of electricity. Some of the nicer models have available battery packs or a DC cord for charging in a vehicle. If you have an oxygen tank, the nebulizer can be run off of the tank, though this requires a high liter flow of oxygen. It may be of value to have backup versions of nebulized medications in inhaler form. While these may not be as effective as the nebulized form, they may get your child through in an emergency.
Other Respiratory Devices
Unfortunately, most devices such as vibrating chest vests or cough assistive devices can only run when plugged into regular current. [Update: the new version of the cough assist device can run on a specialized rechargeable battery.] Chest PT and other physical maneuvers can be used to assist in secretion mobilization. Devices such as the Acapella or Flutter can be used by some patients, as these do not require power.
Apnea monitors are required to have a battery backup, though the type depends on the model. Most have internal rechargeable batteries that last on average about six to twelve hours when fully charged. Virtually all bedside pulse oximeters have an internal rechargeable battery with a life of about six to twelve hours. In most cases these monitors must be plugged in to recharge. In emergencies, a battery-operated fingertip pulse oximeter can be used to track oxygen saturation and heart rate; however, these devices do not have alarms and cannot be used continuously. Monitors can be recharged in a vehicle using a DC to AC power inverter, and a generator is of course helpful in this situation.
There are many different models of positive airway pressure devices, some of which can be run on battery and some that cannot. If a model can be run on battery, make sure that there are extra batteries available. Batteries may last for six to twenty-four hours depending on the type available. Most devices can be run off of DC current in a vehicle with the appropriate power cord. If your child depends on a positive airway pressure device as a life-saving technology, a generator is recommended.
All home ventilators have internal battery backup modes, and most can run off an external battery that can be removed and replaced with another battery when necessary. For the most common type of vent, the battery pack (two batteries) lasts about five hours. Batteries can be recharged using DC current in a vehicle (or off a powerchair) if necessary. All children on ventilators should have at minimum one backup battery or battery pack, and preferably several. But even these batteries can only last a short period of time and take time to recharge. Thus, it is recommended that all children on ventilators obtain a generator to provide power during an outage. In some states, Medicaid waivers or other state programs may assist in the purchase of a generator. All children should have an Ambu bag or equivalent for manual bagging as needed.
Most home dialysis machines only have a short internal battery backup, if they have a backup battery at all. While this obviously varies by type of dialysis and brand, in most cases, a dialysis patient will either need a generator for power or will need to go to a dialysis clinic for treatment. In most cases, it is safe to miss one or more treatments. For more information on this topic, see this article on disaster planning for home dialysis: http://www.homedialysis.org/article/life_at_home/disaster_planning_for_pd_and_home_hd/
Many children, especially those on IV medications or infusions, have medications that require refrigeration. It is wise to have several ice packs in the freezer at all times, as well as a small cooler available. If the power outage is supposed to be short in duration, simply leave the refrigerator closed as much as possible. For longer outages, medications should be placed on ice or ice packs in the cooler. Ice should be replaced daily or as needed.
There are many other devices that a child may have that are not discussed here. Some of these are easy to use in a power outage, such as hearing aids, insulin pumps, and glucometers, all of which run on disposable batteries. Of course it is imperative to always have backup batteries for all of these devices. Any other specialty devices should be discussed with a physician to determine an appropriate plan for loss of power.