Step 1: Document Your Child’s Care
Think about what would happen if you suddenly got hit by a bus. What information would your family, relatives, or other caregivers need in order to successfully care for your child?
There are many sources now to document your child’s care needs. Your hospital or physician’s office may even create one for you. If not, you can make your own medical summary or care book. Some families choose to create an online care document that can be carried everywhere, either in the cloud or on a zip drive. Others use programs like Excel to document. Still others write or print everything out and put it into a binder. You can find hundreds of templates available if you Google the term “medical care binder.”
No matter what your method, you should include the following:
- Medical Summary: A description of your child’s medical issues. A good place to start is to create a standard AAP/ACEP Emergency Information Form for Children With Special Health Care Needs. Additional options can be found in this article on medical summaries.
- Doctors: Contact info, which hospital they are at, how often you see them, last visit.
- Medications: Generic and brand names, dosage, times and method administered.
- Pharmacies: Contact info and list of what they supply you.
- Medical Supply Company: Contact info and what supplies you get and how often.
- Feeding Schedule: Formula/food prep, pump rates, and schedule.
- Therapists: Contact info, schedule (agencies and how billing is covered, if needed).
- School: Contact info for teacher, class social worker, bus company (with bus number).
- Case Manager: Contact info and what services he/she offers.
- Insurance Info and Protocols: Contact info and who you need to call.
- List and contact information of friends or relatives who can help (physically or to answer questions).
- List of resources for additional information, such as Feeding Tube Awareness Foundation!
Step 2: Notify Your Authorities
It is advisable to notify your utility companies and local emergency providers in advance that your child relies on medical technology. 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
Step 3: General Preparation for an 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.
Step 4: 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. Extras may also be obtained through Medical Supply Exchanges.
Make sure you have a two week supply of a shelf-stable version of the diet or formula. 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.
See our page on Power Outages for how to prepare for feeding without power. The article Surviving a Power Outage with Complex Medical Issues provides similar information for other medical technologies.