ALS From Both Sides

Home Prep

Once you determine which rooms you will be using the vent in most of the time, it is important to make certain that the electrical circuits to those rooms won't be so overloaded that you will be blowing fuses all the time. A vent doesn't draw much but a bedroom with a vent will probably include a lot of other equipment; When you start adding up all the electrical equipment that is likely to be used in the bedroom, it is surprising: lights, electric hospital bed, suction machine, nebulizer, electric blanket, fan, TV, CD Player, call system, electric or battery powered lift, and charging outlets for the vent, wheelchair, and every other battery operated thing that requires recharging. (Label every battery charger and cable with the name of the piece of equipment it goes with or you will end up in Charger Hell.) Thankfully not everything will be in use at once, but check what other rooms might be on that circuit. Living rooms can be electricity hogs too. TVs, sound systems, computers and all their peripherals, lighting, space heaters and fans. Kitchens definitely would not be good companions on a circuit with either your bedroom or living area! Few houses have enough outlets in the right places for what you need to plug in so it is very helpful to add outlets or power strips. Having the power supply throughout the house evaluated is a good idea. The most that is likely to be necessary is adding a circuit to reduce the load on another circuit or circuits.

A generator is good to have and essential if power outages are frequent in your area. It seems that every part of the world has its own power problems. If it isn't a blizzard, it is a hurricane. Throw in a flood, tornado, or power grid failure and we are all likely to lose power at times. Getting your name on a call list for the power company is minimally helpful. They can't restore power to your house until they restore your neighborhood. And they can't restore your neighborhood until they restore the portion of the entire power grid that is out. So buy a generator. A full house automatic generator is terrific, but a small inexpensive generator and a back up battery is all that is needed to keep a BiPAP or ventilator running. Run the machine on one battery while recharging the other. The worst thing for a generator is not being used. The carburetor will gum up from the fuel sitting in it and it won't start. In addition to the seasonal checks, run it briefly every month or so.

A bedside table or cart will be needed to keep suctioning supplies handy. A cart is nice because it can be moved with you to the living room. Make an effort to avoid turning your home decor into hospital tacky. Equipment can be in closed cabinets. Visitors don't want to see all that stuff and you want to keep your home as normal looking as possible. If you live in a hospital environment you will feel like a patient and you are not a patient once you leave the hospital!

You will have lots of supplies on hand and will need a place to store them. A closet will need shelving, or buy a tall storage cabinet. You will probably be sent home with all the essentials (which in time you will discover includes junk you won't need once you are out of the germy hospital environment). The essentials are the vent, suction machine, and suctioning supplies, an ambu bag, back-up trach, and rechargers and cables for each machine. You will probably be sent home with a nebulizer and meds for breathing treatments. They generally aren't necessary but are ordered anyway. Good to have on hand for times of increased congestion though.  Ideally there will be a back-up vent. Medicare coverage for a second vent generally requires that you use a different type of equipment at night, and other items. More critical than the back-up vent however, is a back-up suction machine. If the vent should fail (extremely rare) you can use the ambu bag, but if the suction machine fails when you are getting plugged up, there is no time to wait for a replacement to be delivered.

It is helpful to use an O2 Saturation fingertip monitor while getting used to suctioning. It can help you see what you can tolerate and learn what is normal for you. That is important because it is really helpful in figuring out if you are in respiratory trouble if you don't feel right, seem drowsy or confused, or have a cold or increased secretions. An oximeter doesn't have to be fancy or expensive. Renting from the vent supplier is over priced, adds to your copay, and over time adds up. Just buy one. Before you buy one from a medical supply company, check online at pilots supply companies. They may be considerably cheaper and will do the job just as well.

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