A very wise NICU nurse once told me, “Sometimes the difference between life and death is in being prepared.” I took those words to heart and they saved my daughters life. More than once.
When you have a medically fragile child, it can feel like you barely have time to catch your breath before the next giant wave snatches it away. You feel like you’re too busy dog-paddling to even think about developing any sort of plan for facing an emergency, but I’m here to tell you that in spite of what you feel, you can plan ahead. Your child’s life may very well depend on it.
So what are some things you can do? In a nutshell, think ahead. Spend some time thinking through worst-case scenarios and imagine yourself handling those scenarios. What would you need? What would you do? How would you do it? Where would you go?
To get you thinking, I’ll share with you some of the things our family does that you might want to try:
- Make up a slim, easy-to-carry medical records folder for your child.
A plastic folder with clear plastic sleeves for slip-in pages works really nicely for this purpose. It should contain pages with provider names and phone numbers — including home-health, pharmacy and medical supply phone numbers, your insurance information, a concise summary of your child’s medical history, a list of your child’s allergies and your child’s medications with their dosages, copies of any prior authorizations from your insurance provider for medications, supplies, services, or procedures and a listing of your child’s medical procedures and their dates. Carry this with you everywhere that you take your child.
- Contact the fire department that would respond to your residence if you called 911.
Let them know you have a medically fragile child and provide them with information about your child’s medical needs. Especially important information would be letting them know if your child has a trach, airway issues, or a heart condition. Some fire departments will provide specialized training to their department if they know they have a child with a trach in their response area. In my family’s situation, a crew actually came to our house when we let them know we had a child with a trach. They wanted to make sure our house was easy to find and they even wanted to see our daughter’s room so they would know right where to go if there was an emergency. If a crew does schedule a visit to your house, ask them for their input on any necessary changes or improvements to streamline their arrival on the scene if an emergency were to occur.
- Let your electricity provider know if your child uses critical medical equipment.
Examples would be a ventilator, heart rate monitor or pulse oximeter, feeding pump, or other equipment that requires electricity. They may want you to file paperwork with them that would give your home priority in restoring power after an outage. Know the battery life of your child’s medical equipment. If you don’t have a generator, plan ahead and choose a designated “safe house” in case of a power outage — a home of a friend or family member far enough away that they would be unlikely to be affected by the same outage, but close enough to drive to if you lost power for an extended period of time. If all else were to fail, take your child to your local hospital. Your hospital will have alternate power sources for running critical medical equipment during an extended outage.
- Pack a “Grab and Go” bag in case you find yourself on a midnight ambulance run.
At the height of our our family’s medical adventure, our “Grab and Go” bag contained a change of clothes for my husband and myself, a small bag of toiletries, and one of each of our daughter’s specialty medical supplies — things we quickly learned that most hospitals wouldn’t have in stock. In our case, these items included a replacement trach (they never had the right size), a replacement G-tube (same story), a can of her specialty formula, oral syringes that fit her G-tube port or adapters to add to the hospital syringes to make theirs fit, a decompression tube with an extension to fit her G-tube, a small postal scale for weighing the powder to prepare her formula so we could be certain it was being prepared correctly, and three days worth of any of her medications we knew that the hospital wouldn’t be likely to have on hand. Twice a month we rotated out everything in our “Grab and Go” bag to make sure everything was up-to-date, washed, and ready to go. Make it a rule to NEVER “borrow” items from your “Grab and Go” bag.
- Carry an emergency supply kit with you when you travel.
Your kit should be as compact as possible and contain the essentials you would need to change out a trach, a g-tube, etc., or to deal with a failure within a critical piece of medical equipment. Our kit was a shoulder bag containing four mini-kits, each in a separate gallon zip-loc bag: A trach kit, a G-tube kit, a pulse ox kit, and a suction kit. Each bag contained the necessary supplies unique to that kit, along with a 8×10 laminated card with the name of the kit on the card in large bold font. Each kit was assigned a different color for the laminated card so that it could be easily spotted and pulled out quickly in an emergency. To avoid out-dates, we rotated out the entire contents of each kit every month.
- Get Certified in Pediatric CPR and First Aid.
A good place to find out information about how, when and where you can find training in pediatric CPR and first aid is through the company that supplies your durable medical equipment. Another option is through your local childrens’ hospital. If your child has a trach, make sure you receive specific training on how to provide pediatric CPR to a child with a trach and request to be provided with an ambu bag with a trach adapter. Make sure it fits your child’s trach and ask for training on its proper use. If you use a home nursing service, make sure the providers in your home are certified in pediatric CPR and first aid as well.
- Prominently display posters in your home showing step-by-step graphics for provision of pediatric CPR.
Post one in each area where you spend time with your child. We had one in our child’s bedroom, in our living room and in our family room.
- Print out succinct directions in a large bold font that you would provide to a 911 operator.
Post them prominently next to each CPR poster. You may think you know how to give directions to your house, but in an emergency, it is much safer to just read them.
- Make your house easy for your local EMT responders to find.
Place easy to read numbers on the front of your house, on your mailbox if you have one, AND on your curb if you have one. Inspect your house numbers every few months and ensure that they are well maintained and easy to read from the street. Add a prominent marker of some sort to mark your driveway and include it in the directions you would read to a 911 operator for finding your house in the event of an emergency.
Example: We have an 11×14″ American flag hanging under our mailbox at the end of our driveway that helps make our house very easy to spot.
- Make sure you always have a CORDED phone on each floor of your house plugged in at all times.
Do your best to position the phone as close to the area where you spend the most time with your child as possible. The last thing you want to have do when you have an emergency is to run around looking for a misplaced handset or deal with a dead battery. Another option: Keep a fully charged cell phone on your person at all times. A lanyard or belt-clip works well (unless you have a child with reflux — just keep it within your line of vision but out of the line of fire).
- If you have a multi-story home, consider investing in a wireless home intercom system.
Without one, you may not be able to get help when you most need it. We have a unit in our child’s bedroom, in our bedroom, in the kitchen and in the family room. We used to have a home nurse at night and having an intercom may well have saved our daughter’s life. A few years ago, our daughter pulled out her trach in the middle of the night. Our night nurse couldn’t get it back in and she was able to call us and we were in the room within seconds because of our intercom.
- Have a CPR station on every floor of your home.
An alternative would be to have a portable one that you move with you to each room where you are spending time with your child. It should include a hard surface for providing chest compressions — the floor is fine, or if your home has thick padded carpeting, a small sturdy board will work (ours is a mini ironing board with the legs removed). Keep a bag with your CPR station containing a flashlight for helping to spot airway obstructions, a laminated card of pediatric CPR guidelines, a laminated card of 911 emergency directions to your home, and if your child has a trach, an emergency trach kit (a replacement trach and supplies necessary for changing out a trach). Also, if you have oxygen tanks in the home, make sure that they are readily accessible, that you know how to hook them up and use them and that they are properly pressurized. If you have ambu bag or other specialized emergency medical supplies, make sure you know how to use them correctly as well and review their proper usage on a weekly basis.
- If at all possible, make sure more than one person in the household knows how to manage all of your child’s medical issues.
It is best if there are at least two people who know how to operate all of the medical equipment, give medications, and change dressings, trachs and G-tubes, etc.
I am the primary manager of all things medical in our household, but we make sure that my husband is proficient as well. When our daughter had a trach, he got every other trach change. He still gets every other G-tube change to make sure he knows how to change it out and feels comfortable doing so. When we had multiple medications and tube-feedings as part of our routine, he was involved with those as well. Once a week he would set up and administer all of her meds to keep familiar with them. Once a month he would change out her humidifier circuit and set up her apnea monitor for the night. He also set up her evening tube-feedings. While we had both agreed that these tasks were ones that I was more comfortable with and more suited to, he understood and appreciated the importance of being able to step in and know what to do in an emergency.
- Design weekly worst-case-scenario drills.
Every Friday at our house when our daughter had her trach, we would review pediatric CPR steps, see how fast we could find everything we needed for an emergency trach change, rehearse “what-ifs” such as “what if during an emergency trach change I couldn’t get the new trach back into the airway?” Think through and trouble-shoot scenarios that might happen with your child and plan out how you should respond. Include any home nursing providers providing care to your child in your weekly drills. Check your plans for weak spots and do your best to acquire any equipment, supplies or training that you might need. This is probably the single-most important thing that you can do. Weekly drills like this saved my daughter’s life during an emergency trach change where everything imaginable went wrong. Because of our weekly drills, every time something went wrong, instead of panicking, I knew what to do next. A few minutes of your time each week might save your child’s life one day. Make it a priority.
Thinking ahead and rehearsing your response to emergencies will give you the tools you need to transform a moment of panic into a familiar and well-designed plan that could save your child’s life.
If you have ideas you would like to share about how your family plans ahead or if you have questions on how to get started, please leave a comment below or feel free to contact me.
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