Before I got to go home from the hospital, three nurses from my future nursing team came over for two days to practice. Their task would be to train the rest of the team together with my wife and personal assistant, whom I had decided to keep hiring at my own expense. They were all just about perfect in every sense, and I felt lucky that I would get along with at least half of my future nurses. Having someone at your home 24/7 is a severe invasion of your privacy, and it would deeply suck if you hated the nurse sitting a couple of meters from you all day. No chance of that happening with any of these three. We kept practicing the use of the cough assist device, which was to become a crucial device for my survival. We learned that 20 in-exsufflations in one single run was a good starting point when coughing with the trach.
September 4, 2017, was a Monday. One of the three nurses that had made the practicing visit, along with my personal assistant, came around noon to fetch me. It was the hospital policy that new breath paralysis patients are taken home in an ambulance, so I lay on the hard ambulance bed for the whole three hours' trip while my wife drove the empty wheelchair home in my van.
Since the anesthesiologist had screwed up the settings in the travel ventilator, I had to be connected to the clumsy night ventilator with a big active humidifier and a wheeled rack. And of course, after a few kms' drive, a tube hit the ambulance rear door and popped off. The nurse panicked, but my personal assistant, who at that time had no medical training whatsoever, kept cool and followed the tubes starting from my trach until she found the loose end and reattached it. Since then, a tube has popped off several times. Incredibly bad engineering.
At home, we soon realized that if you use the cough assist device every couple of hours, there is no need for tracheal suctioning at all. Coughing is much gentler and more hygienic than inserting a catheter into your windpipe, and much easier to learn. Of the 70-80 nurses I've had over the course of four years, only one didn't learn to use the coughing machine. Besides, it reaches the bronchi where most of the mucus is residing, whereas the suctioning is limited to the windpipe.
There is one but though. When using the cough assist device, the mucus that comes out of the lungs goes into the cough assist device tube, which consequently needs to be washed after every session. This is a minor issue if the machine is used three times a day as per the official instructions, but if it is used every hour or so instead of tracheal suctioning, washing (and drying) the tube after every session becomes a problem.
To solve the problem, I took OpenSCAD and started to draft a mucus separator that goes between the track and coughing machine tube, replacing the straight connector and duct tape we had been using. I have a 3D printer at home, and after a few iterations, we had a perfectly functioning mucus separator at our hands. I put it available for download at Thingiverse, and last time I checked, it had been downloaded over 100 times. Despite this, and the contacts I've had with Philips, the mucus separator still isn't available as an official accessory to the cough assist device.
During the 4+ years since the tracheotomy, I have not had a single lung infection. Most of the credit goes to the cough assist device, but there is one other thing. When I was let out of the hospital, I was instructed to deflate the cuff (=balloon) sealing the trach cannula against my windpipe every day, to drain the mucus that sits on top of it, down into the windpipe from where it can be suctioned away. I found it counterproductive to deliberately let bacteria into my lungs, so we decided to do it backward: if I spend half an hour daily in the Trendelenburg position (which I do anyway when my pants and diapers are changed), the bacteria-rich mucus flows up to the throat, instead of flowing down into the lungs to cause infections. My cuff is never deflated. Neither is its pressure ever measured - just add 1 ml of air with a syringe when air starts escaping from the lungs past the cuff.
A word of caution though: frequent use of the cough assist device means that the breathing machine tube is detached and reattached often. Since the coupling is an idiotic conical friction coupling (God only knows how many deaths that brain fart has caused), there is a very real risk of a careless connection, causing the tube to randomly pop off. After a few (too) close calls, we introduced a double-checking procedure after suctioning the mucus out of the separator, and the tube has stayed on ever since.
During the four years with the tracheostomy, we have developed a routine where the cough assist device is an essential and central part of my care. It is used whenever I feel my airways are obstructed. It is used when I'm short of breath. It is used to buy time when there is a problem with the ventilator. Twice a week, a physiotherapist is pressing my chest for 20-30 minutes to the rhythm of the cough assist device. It even terminates my panic attacks. My nurses have been instructed: "If you are uncertain of the cause of distress, first start and connect the coughing machine and only then start to think." In other words, my survival is fully dependent of the device.
And yet, I keep getting messages from fellow ALS patients, to whom a doctor has said those words:
"There is no such device!"