On August 16, 2017, I woke up at the intensive care unit. The mask was off but I was still breathing. I saw no flames around me and heard no harps either, so apparently, the tracheostomy operation had been successful and I was still alive. Besides that, things sucked pretty deeply: the bed was really hard and uncomfortable, I was facing a wall, and no-one seemed to have told the nurses that I am completely paralyzed and have no means to call for help. My legs were hurting in a bad position, and the ventilator was not giving as much air as my brain would have wanted. I tried to stay calm in order to minimize the oxygen consumption and started counting breaths. Ten bpm means 600 breaths per hour (my BPAP had been at 13 bpm=780 bph), and it took exactly 2,893 breaths before a nurse walked over and uttered:
"Oh, you're awake!"
Perhaps it's a good thing that I was unable to reply.
The nurse went away and soon returned with my parents and my personal assistant who immediately saw that I was in an awkward position, and fixed it. With her being able to communicate with me through eye movements, my stress was immediately relieved. Then came a doctor and performed a tracheal suctioning. It was not as bad as I had anticipated but nevertheless felt unnecessarily violent. "This can't be good for the windpipe in the long run," I thought to myself.
We spent the evening talking with my assistant (you don't need words for that), and after feeding me and making sure my position was as comfortable as possible in that hard bed, she left me for the night at the mercy of the ICU nurses.
In the morning, my wife came with an IKEA bag containing my communicator. She set it up, and I was able to communicate again after 24 stressful hours. No-one had told the ICU nurses that I had such a device. I explained to the doctor that I feel I am not getting enough air and asked if he could increase the peak inhalation pressure a bit. He did, and the day and the following night were much better than the previous day had been.
The next morning, I was transferred to the neurology ward, which was to become the next battle zone. I had felt my lungs getting gunkier and gunkier, and eventually, the gunk turned yellow. Getting an antibiotics prescription was a minor battle, but the big one was - once again - about the cough assist device.
Connecting the cough assist device to the tracheostomy cannula requires a special intermediate piece - one that we didn't have. I asked my wife to find a nurse and ask if she could give us one. But she came back telling me that there are none. So she went to a hardware store, bought a roll of duct tape, and connected the cough assist device to the trach tube.
All would have been well if there would not have been a STASI wannabe nurse in our room. She told us to wait until she will make sure that what we are planning to do is OK. After a while, a doctor came into the room and told us that you can't use the coughing machine with a tracheostomy.
Once again, it was a good thing I was unable to reply.
The bad thing was that my pneumonia was getting worse, I had breathing problems, and the doctor had gone home for the weekend. No-one at the ward had cojones to stand against the ridiculously absurd cough assist device ban, and neither had the ICU doctor who regretted that he was outranked. It felt as if the life of the patient was insignificant in comparison to the hospital pecking order. But I did not give up yet.
Through a good friend and a fellow ALS patient, I got in contact with a breath paralysis specialist doctor at the nearest university hospital. He agreed to come over for a general consultation, since he is the nation's leading expert on ALS breath paralysis management, and my condition prior to the operation had been especially challenging due to abundant mucus secretion. But my real agenda was to get him to okay the use of the cough assist device. I knew he would outrank everyone in my hospital. I was starting to get a hang of the game.
Everything went as planned, and we had a good discussion on how to start using the device: start with small pressures (~±25 mbar) and let the trach get accustomed to each pressure level before going higher. We agreed about everything, but when I asked if he could make a statement that it is OK to start using the coughing machine, he laughed and said that he didn't drive 300 km just to state the obvious. Anyway, he promised to talk with my doctor.
So finally, after a frustrating delay, we got to try out the duct tape patent. After getting used to ±50 mbar with the mask, ±25 felt like a baby raccoon breath and did not bring anything out. But I nevertheless went with the plan and used it for the whole day. The next day, I asked my wife to go to 30, which caused the STASI nurse to jump out of her chair and tell us to wait. Soon she came back with the ward supervisor who stated with an authoritative voice that only the anesthesiologist has permission to change the cough assist device parameters (the device that supposedly didn't even exist a couple of years before) and he is out for the day.
Once again, it was a good thing that I was unable to reply.
Later that day, my sister came over, and my wife managed to lure STASI out of the room for long enough for my sister to change the pressure settings to ±30 mbar. That, albeit still small, did the trick: by coughing in the Trendellenburg position, the phlegm started to come out and in a couple of days, the pneumonia was gone, in spite of the best efforts of the hospital professionals.
I spent 2.5 weeks at the hospital before my home nursing team was ready to take me home on September 4, 2017. Before I got out, there was one more potentially lethal incident when the anesthesiologist copied the parameters from the primary breathing machine to the travel/backup machine and made no fewer than three (3) errors. Luckily, I have learned to be super paranoid and had the hospital technician double-check the parameters. Too bad he didn't have the authority to correct them himself and the anesthesiologist had gone home early...