Working Ventilator At Last?

The representatives from the company who supplies me with the ventilator and the ventilator manufacture were just here. They came as a result of letters I wrote about issues I had with a number of their ventilators.

I must admit that I was extremely nervous about this meeting. After all I had written a number of strongly worded letters of complaint. However, the meeting was very cordial. While the respiratory therapist was setting up the replacement ventilator I talked to the other two people. They asked me to show them how, being ventilator dependent, I managed to stay home alone. I showed them the emergency bag hanging on the back of my wheelchair containing my Ambu bag, spare ventilator circuit connectors and exhalation values. The emergency bag also contains a page with ventilator settings and a list of all my medications.

I also showed how I came up with a method of using a funnel and part of a circuit to refill the humidifier bottle without having to remove it from the ventilator. This method means I am able to fill the bottle without having to disconnect the entire circuit, something that I would not be able to do on my own. They were impressed with how I have my wheelchair set up allowing me the access I need to my ventilator. And how I have small pieces of Velcro on the three vent control buttons I must use by feel when sitting in the wheelchair. I showed them how when we had this house built we changed the layout of the kitchen of the kitchen allowing me to position my wheelchair between the refrigerator and the end of the counter. This allows me to open either the freezer or the refrigerator, remove items and place them safely on the counter. I also demonstrated how the counter by the sink and the counter by the stove are also close enough to each other allowing me to safely transfer hot dishes of pots between the counters and from the last counter to the table. They both said how amazed they were at my independence.

I guess because P and I have always thought about ways I could do things that would allow me to safely stay at home, that we are always surprised when people tell us how amazed they are at how self sufficient I am. When I mentioned this, they both said that in their experience most ventilator patients don’t enjoy the level of freedom I enjoy.

I said we will switch the ventilators this evening when P gets home from work. I didn’t want to switch ventilators when no one would be home in case this vent fails, however, I did try the replacement ventilator before everyone left and I feel that at long last I have two working ventilators with built in humidification.

Then when we switched vents last night, the new vent gave "Humidifier Error" after only 30 seconds of use. This did and did not surprise me because this was the same vent that I had in the first week of September and at that time it worked for 3 hours before giving the "Humidifier Error" message. After a number of phone calls last night we were told they would continue to work at getting me a working ventilator.