Emergency Preparedness and the Child with Special Needs.

One of my biggest worries is how to take care of my medically fragile son with special needs in case of an emergency. It’s taken awhile, but slowly I’ve been able to do a few things to prepare and plan in case of unexpected events.

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I have two Skip Hop diaper bags that we take with us on all outings. These bags keep our Ambu bag, emergency g-tube replacement kit, extra trachs, and a host of supplies we use on a daily basis.

It’s true that Skip Hop bags are a wee bit pricier than the average bag. But a Skip Hop bag is also built to last. Skip Hop bags also incorporate lots of pockets to safely stash trach noses, saline bullets, and the host of other characters kids with special needs need to keep them breathing. (I get no kick backs for saying this. They are simply the best special needs bag on the market, imho.)

I keep these two bags on the top shelf of Parker’s closet in his Safe Room. This closet is next to where we keep his suction machine, vent and his nubulizer.

I have a good quality backpack where I keep at least a week’s (usually much longer) worth of Parker’s medications, an extra g-tube trachs, and bolus feeding supplies. plus copies of how to change each of these out in case someone besides a family member needs to be the one to help him.

In this backback you will also find copies of Parker’s med and feeding schedules, plus directions on how to change out both a trach and g-tube. Finally, I added a copy of the steps needed to administer CPR to a trached child.

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I store this backpack in our hall closet on top of a case of Parker’s formula and a case of water that I purchased packaged in aseptic (think juice box) containers that have a 5 year shelf life.

This closet is just a few steps away from Parker’s Safe Room and other emergency kits. I could gather everything and be out of the house in minutes.

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I have extra oxygen bottles under our living room couch which is next to both the hall closet and Parker’s Safe Room.

Our insurance company has a limit of how many bottles of oxygen we can have. That limit is 3. We have 13 bottles. I bribed our delivery guy with fresh home baked cookies to leave us a few extra bottles of O2 over a period of a few months.

Hey, when trying to keep your kid alive, a girl’s gotta do what a girl’s gotta do.

We purchased a generator a few years ago. If I would have known then what I know now, I would have purchased a model than ran on more than one fuel type. Ours only runs on gasoline.

We check our generator often, starting it up, and checking out the belts, etc. You NEVER want to let a generator just languish in your garage and hope it starts up when you need it.

I’m working to take this preparedness to a higher level. I want to have emergency kits in our car AND at my parents’ house which is where we would go in case we couldn’t get to our home because of an emergency.

But trying to get duplicates off all that Parker requires, even just on a very scaled down level, can be almost impossible.

Notice I said almost impossible.

Over the last year I have discovered ways to help accomplish this goal.

  • You can ask your doctor to write extra scripts and then pay out of pocket for the medications.


  • My insurance will allow us to refill a prescription a week before it’s actual refill date. By doing this I’ve been able to collect a few month’s worth of Parker’s meds for emergencies. The biggest thing here is to make sure you rotate your emergency supply into your current supply so you don’t wind up with old meds in your emergency kit.


  • I’ve found online groups such as Yahoo’s Special Child Exchange to be a wonderful resource. Here I can offer up supplies that Parker no longer needs and obtain supplies that he does. Let’s face it, insurance companies are famous for only providing the bare minimum (if even that) to keep you kid going.


  • Our local classifieds has a section for families who have members with special needs. Be careful though. A lot of medical equipment requires an order to be written for the item to be at the proper settings for an individual child. However, there has yet to be a doctor that I’ve worked with who hasn’t been willing to help when I’ve explained what I’m trying to do.

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We are hoping to be able to save up the funds to purchase an oxygen concentrator to have on hand at my parent’s home via the classified section of our local newspaper. Luckily, my folks already own a generator powerful enough to run a concentrator.

This list is by no means perfect. What I need to have on hand for Parker in an emergency will no doubt be different from what YOU need to have on hand for your child.

Instead this is more of a jumping off point. As I put more thought and prayer into preparing for an emergency for my child with special needs, I am lead to new ideas and resources.

I have no doubt that as you think and pray on the specifics for your child you will also be lead to the answers you need.

What do YOU do to prepare for your child’s needs during an emergency?

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Emily says:

    I’ve said this before, but I’ll say it again! You amaze me!

  2. I’ve stockpiled meds and food/g-tube stuff. I need to find some sort of place to get extra supplies for the nebulizer. I am going to look at those bags—I had no idea such a thing even existed (as in, special needs bag!). I am giddy with excitement!
    xoxo

  3. Have you spoken with your electric/gas/water company? We lost a cousin to DMD a few years ago, and I learned that most utility companies have a “Red Flag” list of high-needs houses/patients and they are at the top of the list when restoring power/water, etc.

    • You know, Mir, I’m pretty sure I have. I know when stuff goes out around here I call and remind them of Parker’s needs, but I should call and make sure they have actually ‘red flagged’ us.

      Thanks for the reminder!

  4. We have friends who work for a phone company that have access to an internet data center with large diesel backup generators and a fuel contract. we’ve been offered shelter there if needed.

    One of our best out of pocket purchases has been a portable (airline approved) oxygen concentrator. It has batteries and a 12 volt car plug, in addition to the wall plug.

    We’ve also built a battery pack for our vent that will let it run on D cell batteries. We felt they’d be easier to get in an emergency than a way to recharge the car battery that came with the vent.

    • Kadiera,

      Tell me more about this portable oxygen concentrator…. :D

      Parker’s vent does have a back up battery. We’ve even thought of purchasing another one.

      You know, just as soon as our money tree takes off. sigh.

      • We got a sequal eclipse, off of craigslist, and paid about 1/2 of retail – still a pricey thing, but it would have cost half of what we paid to rent one to go to Florida over the holidays, and we’ve gotten good use out of it besides that trip.

        It’s vaguely backpack sized (fits under an airline seat, so you know it can’t be too big) and it has a detachable set of wheels. It weighs….maybe about as much as the vent.

        It does continuous flow at 1/2, 1, 1.5, 2, 2.5, or 3 liters; it also does pulse-flow (breath activated; so this normally only works well for adults, and theoretically won’t work on a vent in that mode, though I know people who’ve done it). It’s also far quieter than that brown concentrator (I know, because we have that same one!)

        The one problem to buying off craigslist is that if anything breaks, you may have to pay instead of your DME. It may be worth convincing them to look for a used one for you, as there are several companies online that sell used ones on consignment for patients.

  5. http://neotechproducts.com/home.php
    here is a link that another mom sent me, it is a medical supply company that will send out FREE samples, even to parents. I have gotten 02 nasal canula holders, wraps for sat monitor…they have really cute trach holders…hope you can get a few extras

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