The scariest night of my life.
This is how I’d describe the events that began to unfold from, or started from the night before. Firstly, no matter what I did, how I poked my tongue out or whatever, I just couldn’t breathe. That night before, actually I didn’t get a single wink of sleep because when I lay down I couldn’t breathe. When I sat up in bed I could just breathe. And the only way I could get a decent breath was to use the cough assist machine on full throttle. The cough machine was like a giant vacuum cleaner that both inhales and exhales.
There was a lot of talk about going to hospital right then and there but I was trying to hold out as long as possible. If I went during the night I knew I’d pretty much be with skeleton staff. And above all, I knew it was dying time.
The infection in my chest had won.
Still, somehow, quite possibly through brute stubborn I made it through to the next morning. A miracle, yes. No sleep, suffering pure exhaustion, and my ass was aching like a motherfucker from having to sit bolt upright in bed that night.
I sincerely thank the staff for getting me through.
As the sun rose that next day, I still thought it would be my last. I remember having a shower at 7am because the sooner I could get into my wheelchair, the better I thought I’d be able to breathe. So, as you might imagine the whole shower was full of apprehension and nervousness, both for myself and the Carers included. Yet, with all the movement and jiggling in the shower, it managing to bring up some big green goobies. This eased my breathing.
Before long I was sitting in my wheelchair, coping, only how long would it last? The ventilator was giving me just enough air, my complexion a slight blue tinge, and I was eating antibiotics like beer flavoured lollies. Again a trip to hospital was tabled but once more it was put off as quite conveniently a respiratory specialist was coming out to my residence at midday. So, all I had to do was survive until then.
More nervousness and apprehension. And now to breathe, I couldn’t just sit still and let the ventilator do all the work, I also had to rock from side to side to pump my diaphragm for that extra oomph. It as a war just to breathe.
Then when the specialist arrived, she instantly commented on my blue complexion, turned up my ventilator volumes so that with each breath I’d get more air per breath, and then advice strenuously that if had any further complications that I should go straight to hospital.
I knew without a doubt that hospital was on the cards, but I also knew that they’d kill me. It’s just that my needs were so specific now, and that I knew I’d need specialist one-on-one care which they wouldn’t provide, so basically if I went there it would just be a matter of time until I died.
It might sound harsh but complex illnesses are seen as hard work in a hospital, and not a priority.
Nevertheless, I knew I was so sick that I couldn’t avoid it. I was just trying to decide when the best moment would be.
Luckily, also how the respiratory specialist had upped my settings, that gave me just enough breathing room and a few more hours to make a firm decision. But disaster was inevitable. The chest infection wasn’t going to go away in a few hours, or even overnight.
And I’m not sure how, quite possibly through my delirium and about 4 hours sleep over the two prior nights, I ended up back in bed. I just needed sleep so bad. I also knew that I could never heal with this level of exhaustion. At this point the ambulance was called and it was go time.
Now just before I get into the big drama I’d like to let you all in on a little agreement arranged years earlier. It was with one of my nurses, a good mate, ICU trained, and for the sake of this story let’s call him Paul. But this agreement, it was an iron-clad agreement that if I was on deaths door, he would come to the hospital at any hour, any day and express my wishes. Or in other words, make sure they didn’t kill me.
He also knew my needs intimately, and in the event of disaster mostly likely know what to do.
From my bed, without hesitation I made this call. All I said was ‘it’s time to smash watermelons’, he said ‘cool I’ll meet you at Emergency asap’.
Then I rang my father. Absolutely balling my eyes out, all I had to say was ‘I’m going in’. He knew what it meant. I knew what it meant. He asked if I wanted him to come in, I said no.
Crying even more, I honestly thought that would be the last time I’d hear his voice.
And with that the ambulance arrived. No gracious goodbyes, Immediately I was thrown into the logistical nightmare of how to transfer someone onto a hospital trolley while sitting bolt upright (as I again couldn’t breathe if I was lying down, even at 45 degrees).
The nightmare had begun.
It was by now early evening, I was in the ambulance, my Carer Sally had come with me, and you guessed it, I was still sitting bolt upright. I must have looked a little weird. You know, having the mask and all on my face, wearing about 6 blankets because I was that bloody cold etcetera.
Luckily the hospital wasn’t that far away though, so within 10 minutes I was being unloaded in the Emergency bay. Paul was already there too, so as we entered we looked like one big bloody procession.
Then after my initial evaluation by the doctor (who weirdly I knew because I’d been spending so much time in ED of late), she wanted to admit me straight to the ward. However, there were no beds available. So, after waiting in the ED corridor for about half an hour, I was then shoved into one of the cubicles in ED.
Then I had to move off the trolley and onto the bed, but this time there was no option other than to lie flat. I nearly passed out.
Nothing was going right.
Actually one thing was going right, or went right. As my residence rang ahead to warn ED that I was coming, and told them of my fragile predicament, they had brought the cough assist machine down from the respiratory ward. And OMG their machine had super powers when compared to the one I was used to using. Well, I suppose in a hospital they need this device to rip out sputum plugs.
Anyhow, after switching beds I was having massive trouble breathing, so, Paul grabbed the cough vacuum cleaner thingy. We both knew it well, so we set it to all my same regular settings. Well fuck me grandpa! As soon as he chucked it on my face, the inhale was fine but the exhale almost ripped my freakin tonsils out.
But along with my tonsils, suddenly this enormous green slug appeared on my lap. This is what had been blocking my breathing.
Like that fresh aroma of toilet spray, all the broccoli in my chest began to open up. For a moment I had the slightest belief I could survive this.
Still though, I was stuck in this cubicle, and now the hours began to pass. With Paul and Sally both by my side, with neither showing even the slightest inclination of leaving. ‘We’ve got your back’ said Sal, ‘we are not bloody leaving until we know you’re 100% safe’. Paul followed suit, ‘mate you’re a bit of a moron but we love you, so we ain’t budging’.
This was at 10. 30pm.
We’d now spent 4 hours trapped in that cubicle, and with no air mattress on the bed my back and bum literally ached with pain. Sally was literally moving my limbs every 5 minutes to relieve some of strain. I don’t think I’d ever been so uncomfortable in my life, I couldn’t do anything about it, but hey it was taking the focus off my breathing. I even managed to lie completely flat a few times (to relieve the pain in my lower back), only the relief never lasted all that long.
Also, the impatience was starting to wear. We’d already waited 4 hours and we we’re even one step closer to getting upstairs. I was in chronic pain now, hungry, and my exhaustion beyond belief. Paul and Sally kept telling me to sleep, but my nerves had overridden any relaxation response.
For an update, every few hours Paul would ring my Dad, and the conversation was always the same, ‘we’re still waiting’ with Dad replying with a barrage of expletives. And honestly I was starting to feel the same. I mean for the last 24 hours any breath could have been my last, and here I was waiting and waiting. I hadn’t even been given any IV antibiotics yet.
But Paul, the ever optimist, I reckon for the whole bloody time he kept explaining the hospital protocols to me. Who goes where, when and how, and how bed allocation can be such a juggling act. Especially at a time when there are so many sick people.
It was now 12am.
Paul continued. Now with regards to your health this can go either of two ways; now obviously we want you to improve, go to the ward and all will return back to normal in a week or so, or this could go pretty pear shaped. Very pear shaped. But he wanted me to know what to be ready for. He knew my health better than anyone, yet he could also see that I had started to decline again
The two main things he talked me through were Code Blues and ICU intubation.
I already knew what both were, actually I’d already lived through both before, but hearing Paul’s explanations now had me kind of worried.
The clock ticked over to 12.30am.
Both Paul and Sally had never left my side, a part from going to the toilet a thousand times because of all the coffee. Though more importantly, we all just got word that there was a bed ready upstairs. Thank God because my ass was red raw by this stage, and my health worsening again.
So we made the trek to the fifth floor, a place I knew very well from many prior visits. In fact, this was the exact place that I’d arrived at 10 years earlier after my flight back from Cairns. Long story.
Still, I knew exactly where I was going, and I knew the décor would all be familiar. And on arrival, once again we arrived like a royal procession. Or maybe a group of friends carrying a coffin. I knew my outlook was still not good.
My blue complexion had returned.
Blah, blah, I transferred over to their bed, blah, blah, again I was told there was no air mattress. I was told they would find one in the morning. Now, just saying, for a quadriplegic patient this is a very well known essential. Honestly I was a bit pissed off. And as a result Sally kept having to move my limbs every five minutes.
And the other problem, the back of the bed would raise up past 45 degrees. We were told it was a safety thing, however I still couldn’t breathe unless I was sitting bolt upright. So Paul and Sally went to work, chocking up the backrest with whatever could be found, it was and OH&S nightmare. But most importantly I was breathing.
Nevertheless, I think I’ll start wrapping this story up. It really is starting to drag on a bit.
It was now 3am.
Paul had pounded the fuck out of me with the cough assist machine, Sally had kept my comfortable, and I’d even started IV antibiotics. Plus, Sally had sat me up so upright that all I had to do was last 4 more hours (probably sleepless) then when the morning staff would arrive I’d be alright.
The dream team and I all had a discussion, and we all agreed that it was safe for them to go home. Now 3.30am, what troopers.
They both left, but not before taking the obligatory selfie. Still to this day, one of my most treasured and awkward photos.
But being all alone now, the game had totally changed. It was one of mercy and unknown fortune.
Completely exhausted, delirious, terrified, I continued to sit bolt upright in my bed. My ass ached but this was a pure battle of will.
The nurses thought I was crazy.
About half an hour had now passed, and of all the bloody things I began busting for a piss. Another 15 minutes passed, and truly I was so tempted just to wet myself, but being too civilised I asked for a bottle (via nods and guesses). So, this nurse grabbed a bottle and gave me a piss. Only because of how the bed had been tilted to take the weight off my ass, the urine completely back-flowed. I was like, ‘yeah well fuck it’. I knew I had to keep sitting bolt upright.
But the nurse kept insisting, and insisting, and insisting we need to change your undies. I kept shaking my head vigorously to say no. I knew my care, and I knew I couldn’t lie down and roll.
Only possibly because of my exhaustion (and extensive use of the cough machine), my voice was completely inaudible. The faint murmur meant, well, bugger him let’s do our job.
Next thing a warm bowel of water and grandpa knickers arrived.
Still shaking my head in revolt as the nurses now lowered my head, I knew in my heart things were about to get really fucked up.
No voice to scream, no arms to wave, no dignity left to save.
The nurses rolled me over, pulled down my undies, and at that point I completely stopped breathing. My heart monitor redlined. The oxygen saturation bottomed out.
I died in the most undignified of ways.
All that was left now to save me was CPR.