Power To Go: Doubling My RV’s Battery Capacity!

In the midst of this heartache, our children were offered hope in the form of a chance to participate in a medical drug trial. An experimental drug. Around the world this trial eventually had 124 infants with SMA who were participating in this medical trial – 2/3 of the babies would get the drug while 1/3 would get a placebo. It was a blind study. It meant being a guinea pig! There are multiple drug trials happening around the world at any given time that never result in a drug that is approved by Health Canada or the FDA or whatever the governing authority is in your country. At first I was against this option – fortunately my kids didn’t listen to my objections and concerns. A blind study that wasn’t so blind because with this disease that while the progressive debilitation may plateau, improvement never occurs, Emmett started improving. This trial drug was transporting his brain’s messages to his muscles. It was little changes, but wow, they were exciting. It’s impossible to change a child’s ‘engine harness’ but this trial drug was reworking pathways to allow the message to get through. This experimental drug was so successful that they stopped the drug experiment early and all of the kids in the trial got the drug. Kids were improving on it; and literally dying if they were getting the placebo. Everyone left got the drug. Five years later and this drug is now approved in multiple countries. It’s expensive. Two new treatments have been discovered, one being a gene therapy treatment which is a one time application that is a huge step forward when treatment happens before age 2. It’s even more expensive. Emmett’s drug is given by lumbar puncture every four months. He’s had 18 lumbar punctures in his five years. If that made your spine shiver, I appreciate that. Mine quakes when I think about what this little boy goes through. While the drug company stopped the placebo part of the trial, 5 years later Emmett is still part of this study. The drug company provides him with the drug at no charge. They cover the hospital fees. So often we hear about how heartless big pharmaceuticals are; I’m hear to stand up for them and tell you how amazing I think they are. Wow. A drug that can create new pathways in the nervous system so that the brain can send messages to the muscles. I see it with my own eyes but I don’t understand how it is possible.

So when Emmett wants something, like going camping in ‘arvey, I’m going to do what I can to make it the best possible experience he can have. If you think that I’m obsessed, you’re right. You read that in my article about the DIY kid’s wheelchair and the backup power supply. I haven’t written about my seat cooler in MotoIQ, but as we’re in the midst of a heatwave right now, here’s a link to our blog where I describe how we made a seat cooler. Think of every wheelchair you’ve ever seen – how many of the seats are black? Almost all of them, right. Putting a person who cannot move into a black seat during a heatwave is like putting a race car driver in a firesuit in their car and doing up the windows, strapping them into their harness and not letting them out. You’ll bake. Like racing cooling shirts, commercial wheelchair cooling pads are astronomically expensive, so this is my design for a wheelchair cooling seat. This article about my RV power search actually extends what I learned and started in that article on the back up power supply; in that article I refer to installing a 300 watt inverted in our RV for Emmett. Here is what we’ve done from that point forward.

First of all we did the most very basic upgrade. We replaced the two existing deep cell batteries with two Interstate Group 27 12 volt deep cell batteries. This was recommended by Triple E, the Canadian manufacturer of our RV. Next we needed to install a power inverter to provide AC current. Now you may be thinking, if you go camping why don’t you just plug into the power outlet at the campground. If that is available then we do. But some (most actually) of the most amazing and beautiful provincial parks here in British Columbia do not have any provision for providing campers with electricity. So we were on our own.

After researching we selected a 300 watt pure sine wave power inverter. The power inverter itself uses up battery power, so selecting the smallest one that will meet your requirements is key. With this 300 watt pure sine wave power inverter we have the same kind of power that you get out from your electrical utility provider. Of course, a pure sine wave inverter costs more money than the inexpensive modified wave inverter, which offer huge amounts of wattage for the same dollars as this 300 watt pure sine wave inverter. But that cheap wattage in the form of a modified wave unit provides a simple form of power that can damage complex electronics, overheat electrical motors, and basically I don’t want one. Emmett’s medical equipment requires pure sine wave output – and from the research I’ve done it is the only kind of inverter I’ll purchase going forward. Peace of mind is worth the cost.