Day three. It's finally starting. First later than expected, then suddenly earlier than expected. So ventilation was switched to mobile mode. So without humidification and ultra-tight straps on the mask. Just in case. Sucks, that. Especially this dry ice-cold breathing air. What can you do? We're about to go into surgery. Well, yours truly is more likely to be lying down. "My" being a strange word. And so very apt, given my flyweight. What brings us here, someone asks? Didn't they tell me? I'm not on for another hour. Too long to stand out there in front of the door in a hallway that is not sheltered from the wind. And too short to roll into the ward again. So what the heck, back to my room in the FBI, a quick re-stocking and then it's back to the operating theatre. This time for real.
Looks quite nice, here. Too bad I couldn't take a picture. I've never had to go through a real operation before. I don't mind the surgery. It's highly interesting. I love it when the anaesthetist tells you to count down from ten - the last time I had a bronchoscopy at KRI I could still talk a bit .In obvious expectation that I would drift off at five at the latest, questions about my job, my studies and my training followed at that time. Today it is interesting in a different way. First of all, we enjoy a medically controlled overdose of propofol with subsequent opioid administration from a BTM abuse point of view. At least I think that's what it was.
The next prank is the question of how it is with me, with the respirator mask and so on. I'll probably have to manage without it for a while. Ergo, we'll switch to 100% oxygen for now and wait. And wait. And wait until my blood saturation has also risen to 100. As I'm about to get bored, my eyes suddenly close and I'm gone. But really shot down. I don't know anything more about what happened for the next hour. Zero. Zero. Niente. Such a stupid rush. Next time I'd at least have a round of nitrous beforehand. Or opioid first and propofol ten minutes later.
Hello? Is that you? The kind eyes of my absolute favourite nurse from the FBI look in my direction. I am still too sedated, too hypnotised to say competently that I need my speech computer to be able to express myself. She is on duty at another house these days and is not yet aware of my situation.
As it turns out, no one there knows how to turn on a Microsoft Surface Pro. Well, the only button on the side that says Power might be worth a try. I close my eyes. I sense that this is not the lift in the Friedrich Baur Institute. But then we would already be at the station. As a cursory glance should confirm, we are not in the FBI. This is an intensive care unit at the Großhadern Hospital. Great, everything must have gone just as smoothly as so many nurses predicted. After all, I'm wearing a CPAP mask. So the extubation worked. This time I still escape the tracheotomy. This time I leave the hospital without a cannula. But it's exciting how many are now getting into a discussion about the cannula. Of course, those about the PEG are now superfluous.
Afternoon of the third day in the clinic. I still can't talk about anything because no one can get my speech computer to work. I wouldn't have anything exciting to say anyway. They tell me briefly that it took three attempts to get the tube in. But the removal worked well. My lungs accepted NIV (non-invasive ventilation) well after the operation. This is not a matter of course for ALS patients. Nevertheless, it was appropriate to keep me in intensive care for another 24 hours.
With my hands and feet - wink wink - I finally manage to show a caregiver where to turn on the Surface and point the camera. Hallelujah. Whatsapp, here I come. After I have explained to the nurses which important parts of my ventilation they forgot in the operating theatre. Without my more comfortable pillows, which I wisely brought myself due to the lack of them in this special clinic, I would have had to live in doubt. But I imagine it would be difficult to sleep without a mask.
Annoying here. Everything beeps, there's always a bright cold white light on. Nobody knows me, let alone my specific clinical picture. My file probably says that I refused to give information about it. I only wanted to point out that I tell the same things at every visit, including this statement that I tell the same things every time. And I think it's slowly but surely becoming impertinent to keep asking me the same thing when no one ever reads the file anyway. It's really exhausting for someone like me who can only communicate with his eyes. So what? I'll just go to bed at 6 pm. I usually only do that if I've slept through the night before.
Day four. Today or tomorrow at the latest, I'm going home. No way. This place is so unbooked, I'll have to stay until Monday. What a malicious, malicious insinuation. But seriously, why exactly do I have to stay another five days? Two of which are not being worked at all? Neither from the doctor's point of view nor with regard to any therapies. Not that there was any physio during the week. If the therapists only show up when the patient has to leave in two minutes for a general health check-up or an operation. Oh, you're being operated on? No, I'm just visiting Father Christmas here. Welcome to the information age of the 21st century.
Day five. Nothing new in the West. The most exciting thing is still my discussion with the nutritionist. Sometimes it is not easy for me not to become abusive. I can even take 200 ml boluses of my own food from home without a break. But the stuff from the hospital upsets my stomach. And after I find out why, my mind too. You can't give a vegan a meat-based tube feed. I'm not talking about milk protein or anything, but pureed meat. I am told that there is no such thing as a vegan tube feed. Vegetarian may be possible, but it's not available here in the hospital. Strange, because I have a whole cupboard full of them at home. And everything meatless, guaranteed. It's a good thing I didn't throw up in the mask there. When I was offered a beef broth as a substitute, my nurse and I realised that this conversation would lead nowhere. They will find out more and get back to me. You know the result.
Yes, just a moment, we're not done here yet. What about my release? Tomorrow, Saturday, no one will be here to release me. Especially not on Sunday. And on Monday? I know that game. It ends like my last discharge on a Friday. Suddenly all the doctors are gone. For once, this is not cynicism but a description of what I have already experienced here. A pattern is discernible. A scoundrel is he who thinks evil of it. We agree on a dismissal on Saturday, written on Friday. Still no one can explain to me what today, Friday, has brought here. We don't even need to start talking about Saturday.
Day six. I am being discharged. The intensive care transport should be here soon. Things packed and ready to go. Only the transport doesn't come. Not until the evening, when it is already dark outside. I don't want to do that job either. But it's mainly the lack of organisation. I can't plan a 60-minute drive from Frankfurt to Munich. And on principle, I can't order carrying aids until the transport has arrived at its destination. So we wait until the second ambulance arrives from the Harras to Grünwald. KTW, good keyword. As in every case so far without exception, no intensive care transport arrived as prescribed and ordered by the doctor. Strictly speaking, I should never have been taken along by a transport without an emergency doctor or staff trained on the machine. But that is a topic for another time.
But part four, which follows here.
