ALS From Both Sides


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

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 very 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.

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.

If you have been using a baby monitor, the noise of a beeping vent will be transmitted loud and clear. Unfortunately the whooshing of the vent will also be transmitted and that isn't appreciated by most people on the listening end. Switching to a vent may require switching to a different call system.

The most commonly used beeper is a battery operated door bell. You push the button to transmit and your caregiver has the ding dong part. There are two big limitations to the doorbell:

  1. First, the button can be too hard to press even if you find a way to position it always in reach. The solution is to use a capability switch. This is an easy to press, large button which can be positioned anywhere there is a bit of movement possible.
  2. The second problem with a doorbell is lack of range. The transmission is too weak to be picked up at any distance. If your caregiver walks out the door, you can't beep them. That is fine if your caregiver is confined to the house, but if he or she is to be free to go out to mow or shovel or chat with a neighbor, a doorbell isn't going to work.

In the past, it was fairly easy to adapt a wireless door bell for use with a capability switch. 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

Finding a workable call system is very important but never forget that it is limited. If the alarm needs to be turned on but isn't, if the caregiver forgets to have it with them, or if the call button isn't reach (forgotten or just shifted) the system is worthless. Unless you have a back up system, the caregiver must be close enough to hear the vent alarm. For me that means that during the day when I am always at my computer, I can beep my husband or call his cell phone using Skype. I don't have to be able to talk for him to know I am the one calling and I need him. With a surge protector that provides a few minutes of back up power, I can still call him if the power goes out. So, I feel safe during the day with two ways of summoning him or other help. But when I am in bed the only safe backup to the beeper is for him to be close enough to hear the vent alarm.

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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