Camping when you need power/Camping when you use oxygen

So you want to go camping, but your child uses machines or oxygen at night.  How do you get power?

My first suggestion is to camp in a place that has power.  There are lots of campgrounds that have power.  If you or someone is planning a trip this should be a top priority.  Tell the organizers they need to choose a location with power.

This may not always work out...but it makes life easier if it does.

I will split the rest of this article into 2 categories: Camping in an organized campground versus wilderness camping.

Power when camping in an organized campground
Organized campgrounds will usually make you turn off a generator at 10 PM.

1.  Often the camp host will have actual power (not generator) to their trailer spot or there will be power at the group site.  You can ask the camp host beforehand if they will let you run a long extension cord for your child's machines.  I have had them often say yes.

2.  You can put the generator far away from the camp sites and run a long extension cord back to your camp.  Ask your camp host beforehand.  Make sure to tell them it is for medical needs.

3.  You can buy a deep cycle marine battery (boat battery) and an inverter that hooks directly to the battery.  These are both available at the Walmart Tire center.  You will need to check power requirements of your machines and the power of the battery and inverter.  Inverters come in different power sizes.  Then you would need to charge up the battery with a generator during the day (when you can run the generator) and use the battery at night (since batteries are silent).  You can buy reliable and cheap generators at Harbor Freight.

4.  There are solar powered devices.  Once again you will need to check how much power you need and how much the device puts off.  A solar panel by itself will not help unless all of your machines have batteries.  If all of your machines have batteries then you can charge them with the solar panel during the day and run them at night.  If your machines do not have batteries then you need a solar panel and a battery.  There are many solar devices on the market.  I have been looking at one called "Goal Zero".  It comes in different sizes.  It is a solar panel and battery in one.  It is pricey, but looks awesome.  They are available online or at REI.

5.  For oxygen you can bring tanks instead of the concentrator.  Just make sure to calculate if you would need to change out the tank in the middle of the night.  If so, you may want to bring E tanks instead of D because they are larger.  There are approximate usage times on the side of each tank based on your flow rate.  You can also ask homecare to help you calculate this.

6.  You can borrow a portable oxygen concentrator from your homecare.  It is free and you don't need an extra RX to borrow it.  You just need to call homecare in advance and reserve it.  The portable oxygen concentrator has a battery.  You can also get extra batteries.  (I don't know how many extras you could get).  So you may need to charge the portable concentrator during the day and run it using it's battery during the night.  To charge the battery during the day you could #1) use a generator #2) use your car's built in inverter (double check that it puts out enough power) #3) buy a cigarette lighter inverter (check power before hand) #4) buy an inverter that hooks to a deep cycle marine battery (as described in #2 above)  ***note:  If using your car to charge things, make sure that the car is running so you don't kill the battery.  You may also need some extra gas for the car

7.  How far away from homecare will you be?  Could you bring half of the tanks needed and make a day trip into town to swap out your tanks halfway through your trip.  (Unlikely I know...but it can't hurt to look into all options)

Power while wilderness camping
In addition to suggestions 2-7 above you can do the following

1.  You can run a generator at any time of day or night.  They sell cheap and reliable generators at Harbor Freight.


What suggestions do you have for camping when you need power?  What has been successful or bombed?  Please comment below.

Please like share and tag our FB page for future posts.
https://www.facebook.com/SupportedInOurTrials/

Heal Diaper Rash

For kids who wear diapers their whole life...red bums are inevitable sometimes.

Here are some ideas to heal diaper rash once you have it...

#1) My number 1 tip is to let them be naked.  This keeps all moisture and acid off their bum and allows it to heal the very fastest.

#2)  If letting them be naked is not an option...use a cool temp hairdryer when changing them to completely dry the bum.

#3) Eliminate wipes while dealing with diaper rash.  if they are poopy, put them in the tub and rinse poop off with water.  (Optional) You can then let them sit in an warm oatmeal bath (put oatmeal in a nylon and tie top.  get wet and keep squeezing the oatmeal bag until the bath water is white.)  then when drying them off,  dab the bum with the towel instead of wipe.  Then let run or use the hairdryer tip.

#4) Mix equal parts of the following 3 things...
Maalox or Mylanta (cuts the acidity of the pee)
Lotrimin or Monistat (gets rid of any yeast or fungus)
Original Desitin (not creamy) (acts as a moisture barrier)
Seriously try it.

#5) Do not try to wipe all the cream off each time you change their diaper, this just causes more damage. Just leave it and slather more on.

Those are my tips, but here are some tips from other people...
Triple Paste from Walmart
Butt Paste
Bag Balm
Corona Cream
1/4-1/2 C. baking soda in a bath


What has worked for you?  Comment below

Like, share and tag our FB Page here

Sanitizing Surfaces

While out and about, I used to carry around lysol wipes in Ellie's wheelchair "GO BAG" everywhere we went.  I would use them to wipe the changing table, wipe the table at a restaurant before eating etc.

The lysol wipes took up a lot of space in her bag.

I have since discovered using hand sanitizer to sanitize those same surfaces when away from home.  I always had hand sanitizer with me, but now I have discovered this 2nd purpose for it, other than hands.

The hand sanitizer I like is called Avagard D.  It is the same hand sanitizer that they use in my local children's hospital.  It has lotion and does not dry out your hands.  I buy it in bulk.  But the size I carry is this small 3 oz bottle.  When it is empty I refill it from my larger bottles.

When I need to sanitize something I squirt some on the surface, then I wipe it around with paper towels (in a bathroom) or napkins (in a restaurant).


How do you sanitize surfaces while out and about?  What hand sanitizer do you like?  Please comment below.


Please like share and tag our FB page.

Cord Organization for Medical Equipment

I hate cords to all of the machines we have to use.  It drives me batty.  If I could make 1 medical device it would make everything completely wireless!!!!!

Until then, here are the solutions I have come up with...

Tip #1) Loop the cords loosely and leave as little extra cord as possible.  Wrap cords with a small piece of 1" coban.  It is secure, but doesn't leave the cords with sticky residue.  (Plus usually free...if you have a bunch laying around your house like me!)

Tip #2)  Label all of the cords with tape by the plug.




Tip #3) Have them plugged into the power strip in the same order you have them sitting on the shelf.




What tips do you have for keeping cords neat and organized?  Have you tried my coban method?  Leave a comment.


Like, share and tag our FB page.

Life Insurance for Medically Fragile Kids

It is nearly impossible to find Life Insurance for medically fragile kids.  Even the Gerber Grow up plan will deny them.  As soon as they find out they have a pre-exsisting condition, the Insurance company runs the other way.  I don't blame them.  But that sticks parents with knowing they will someday have to come up with thousands of dollars for funeral and burial expenses.

We have discovered one chink in the system.  If you/or your spouse (the parents of the child with disabilities) qualify for life insurance, then you can get something called a "rider policy".  The rider policy we have is $10,000 coverage and only costs a few additional dollars per month.  It covers all of our children until they turn 21.

When signing up for the rider policy I asked very specific and pointed questions telling them that my daughter is medically fragile, has a lot of medical needs, we know she is going to die, etc.  And I asked them if they would cover her and they said yes.

Have you added a rider policy?  Have you discovered any other life insurance "hacks"?  Please share tag and like our FB page.