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
backup battery are all that is needed to keep a Bi-level Ventilator or ventilator running. Run
the machine on one battery while recharging another. 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 backup vent. Medicare coverage for a second
vent generally requires that you use a different type of equipment at night. More critical than
the backup vent, however, is a backup 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 a 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 manufacturer's 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!
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.
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
Bi-level Ventilator 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.
