ALS From Both Sides


Home Preparation

Power Supply

Having an adequate electrical supply is important when a ventilator will be in use. The DME (Durable Medical Equipment Provider) you get your ventilator from may send someone to look at your wiring before entrusting their expensive equipment to you. It is important to make certain that the electrical circuits in rooms where you will be using the vent 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 also 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.

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.

Storage

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. 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.

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!

Beep Beep Beep

A ventilator will alarm if the volume of air being delivered drops below a set level, such as when the hose is disconnected from the trach or vent, or excessive air is leaking around the trach. It will alarm when the patient is getting congested and not enough air can be pushed in. If the battery is getting low, it will alarm but continue to run until the vent's internal battery is depleted. In practical terms that means beeping whenever you are suctioned, popped off the vent for a turn or transfer, or the power source is changed. The alarm can be temporarily silenced by pressing a button, but over time you begin to just let it beep for the couple of minutes it takes to suction or whatever. That “beep creep” leaves your caregivers somewhat deaf to the sound!

The huge problem is that although that alarm sounds so loud to us, it isn't always loud enough to alert a caregiver who is sleeping in another room, watching TV, showering, doing laundry, vacuuming, or outside. Bottom line is that you need a second way to get their attention and that second way must have good range and a beep or vibrate option. There is a big lack of this technology available. In the past, it was fairly easy to adapt a wireless door bell for use with a capability switch that can be activated with only a small amount of pressure. Unfortunately, nearly all the wireless door bells today have lithium batteries which cannot be adapted. I have put together a list of call systems that can be used with a capability switch. It is a short list! Go to  Call Systems for ALS Patients

It is helpful to have 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.

Home Again

It takes a while to get over the heebie jeebies of the whole vent thing, but once you are settled in a bit, there are couple of things you can do to simplify care. This process will take a little time and will happen as you become comfortable with care routines and as your trach and feeding tube stomas heal. (Well, they never actually heal because your body will always want them closed!) The same relaxing of rules applies to your vent. There are no official rules for how often you change the hoses (circuit) and filters when you are at home. Hospitals may require daily or every other day changes. That is not needed for home care and would be horrendously expensive. Try a two week change and, unless you are very prone to pneumonia or have a big problem with mold growing in the hoses, you can stretch it out to monthly. If you use a humidifier on your vent, stick to frequent cleaning of that equipment as mold and fungus love humidifiers.

First, begin to separate the stuff you were taught about trach and feeding tube care from what really needs to be done! What you were taught is hospital protocol and although it is necessary for a germy hospital and post op care, it is not necessary or realistic for home care unless you have a constant parade of different caregivers. Refer to Trach Care: The Rest of the Story for more info on hospital care versus home care.

Organize

Make a list of supplies that will need to be reordered. Include the manufacturers name for it, product number, how many per box or case, who to call to reorder, and phone number, space to enter date ordered and number ordered, space for date received. This will help you keep track of how much stuff you use so after a couple of months you will be able to order a two or three month supply all at once. You will see which items take more time to be delivered, and hopefully won't end up with a two year supply of anything to find space to store because you ordered 10 cases instead of 10 boxes!

Download a sample supplies sheet. Supplies sheet.doc

Put together a medication record and add lines for vent maintenance. Add a copy to the packet you take along to medical appointments so you have a list of your meds and dosages with you.

Download a sample med record. Med record.doc

Out and About

Now that you are home, it is time to leave! With the vent you should have more energy and less anxiety so going places will be easier. Your trach will draw far fewer stares than your BiPAP headgear did -- and you will be pink and healthy looking! For travel, you will need a travel bag for the suction machine. Mine came in one and has room for suction kits and other stuff such as Kleenex , straws, etc. That is all you really need for short jaunts, but I strongly recommend keeping a adapter cable in your vehicle that can power the vent from the cigarette lighter/power outlet. Also keep a second ambu bag in the vehicle. Don't ever count on remembering to bring the one you have in the house along! You won't! Whenever we are going to be gone for a few hours, my husband insists on bringing everything but the kitchen sink. We take my back up vent in a carry on size suitcase and always keep a towel for spills, sweater for air conditioned rooms, and a second urinal in the van so there is no forgetting the essentials.

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