The Queen of the Wean
Okay, so at this part of the story I’m still in ITU, and things are still not good. I know, I know, I can hear you groaning that this is going to be another dreary, depressing post- but it’s not going to be as heavy as the last one I promise.
So things weren’t great at that time, as we all know. The main thing preventing me from moving on was my breathing; in fact the only reason I was on intensive care (as opposed to a more basic ward) was because I needed such invasive support to allow me to breathe. That invasive support was the ventilator. Without going into too much detail, the ventilator was a fancy machine that was attached to a hole in my neck and moved air in and out of my lungs when my muscles couldn’t be bothered. By “couldn’t he bothered”, I really mean “were permanently or partially paralysed” so we shouldn’t be too harsh on the poor blighters; in fact all the muscles that I needed to breathe were permanently paralysed apart from my diaphragm, which was partially affected, so I really should be grateful it chose to stick around. The reason for this was the nature of my injury. Again, without sounding like I’m regurgitating a medical textbook, this is how it works: the connection from my brain to my body -my spinal cord- was damaged because my neck was dislocated (more on that another time). This means my brain could yell as loudly as it wanted at most of my respiratory muscles and it wouldn’t matter; they couldn’t hear a damn thing. My diaphragm on the other hand could hear, but initially it’s hearing was akin to a retired soldier who had spent his entire long and industrious military career firing the loudest artillery possible and just loved the way it made his ears ring. So the job at hand was to cultivate a happy, communicative relationship between my brain and my diaphragm so I did not have to rely on a big machine to breathe. This process was a gradual one, and it’s called weaning; you’re being weaned off the ventilator.
I vaguely remember being told early on that they estimated 3 to 6 months for the wean. That’s months of secretions, plastic and probably being fed through a tube. That’s still better than the potential of not getting off the ventilator at all, which was discussed as a possibility before I came out of the coma- in fact there are many people with injuries even more severe than mine who do end up permanently ventilated and still manage to live very wholesome and fulfilling lives (Christopher Reeve was one of these). My wean took 5 ½ weeks and I swear to Dickens it was probably the longest 5 ½ weeks of my life; so huge respect to those guys who crack on even while ventilated. One of the really cruel things about spinal cord injury is all that separated me from needing a permanent ventilator was probably one inch; if I had damaged my spinal cord one inch higher that would be me. Equally if my injury had been a few inches lower I would still be able to use my hands. It’s a game of inches where nobody wins. Having a deeper understanding of what was seriously wrong with my nervous system greatly increased the psychological burden I was under; ideally the bad news would be drip fed at a rate the patient could handle but I had to deal with most of it at once, full frontal. I would like to think that dealing with all of this so early meant that I actually had a head start adjusting to my new reality but I’m not sure that’s true; it still took me a very long time to get myself moving forwards.
Okay so before we continue let me give you some more context. Intensive care, as the name suggests, is intense: it’s where the really sick people go; the ones in imminent danger of dying, or who need a lot of medical intervention to prevent them deteriorating. Most people don’t stay long; intensive care beds are in high demand and short supply- getting people stable enough to be moved to where they require less support is the name of the game. The majority of the patients in intensive care are also either sedated, very ill, or both. If you work in ITU your patients often don’t talk back. All of this meant that I was a strange outlier. I was a doctor, I was awake, I was young, I talked/mouthed back (usually politely) and I was medically pretty stable- just very weak.
At work, prior to my injury, communicating with senior consultants in intensive care would be a rare thing- in fact I don’t think I ever had to call ITU in QMC during my brief stint as a baby doctor. You see back then I was a new doc-on-the-block, fresh out of the womb, green as grass; generally doctors that fresh are derided as being close to useless in the general medical hierarchy. Okay, maybe not useless, but the equivalent of a peasant: I was good at tilling the fields but wouldn’t be trusted with any lordly duties. So if I ever had to speak to any of these people I’d probably be sweaty palmed, close to incontinent, very stressed with my main goal being just not looking stupid. Going further into the bizarro world that is the hospital ecosystem is outside the scope of this post, but what all of this meant was that I was now a peasant hanging out in the palace being waited on by the nobility rather than the other way around. I took advantage of this odd role reversal in many ways, one of which was anointing some of the consultants with interesting nicknames that I dreamt up while staring at the ceiling.
One of these was “Unprofessional Paul”. There wasn’t actually anything unprofessional about Paul at all; he was a very kind and capable doctor who was deeply involved in my recovery. He just happened to come and see me (probably on his day off, now that I think about it) in a hoodie and jeans, and me being me made a gag about his professionalism and work attire. I think this sort of bravado was a way of keeping me sane and maintaining some normalcy when everything else was so tilted; I was still venturing out of the hole I was in every now and again.
My favourite of all of my inventions was the “Queen of the Wean”. I was very pleased myself when I came up with this one. The Queen was a very senior consultant who oversaw my progress moving off the ventilator. Every day the amount of help the ventilator would give me would be reduced so I was doing more of the work myself; I was training to breathe again in a different way. This structure and constant improvement was so vital to my sanity; it gave me something to aim for every day, and it was something that finally I could work on to help myself- I was not completely helpless, completely useless, it wasn’t all in the hands of fate. In the beginning I would do more work for five minutes. After just five minutes of breathing, which I had taken for granted for all of the 23 years prior, I was exhausted. Even through the haze of sleep deprivation, medication and grief I remember being alarmed at that feeling; working to pull my diaphragm down to drag pitiful morsels of air into my hungry lungs, panic setting in as they cried out for more oxygen that I didn’t have the strength to give them. Then the ventilator- my plastic, sterile enemy that I wanted rid of so badly- would save me, taking over and allowing me to rest. This battle would continue day after day, from five minutes to 10 minutes to half an hour as I grew stronger.
The photo is from early March; I had been in intensive care for a few weeks. The staff rigged up a portable ventilator so that I could go outside. You can see that even after just a few weeks the injury was taking its toll. I was wheeled through the hospital, down corridors that I had walked maybe hundreds of times, past the Costa coffee that I had spent so many hours in, past so many wards that I had worked on. I felt like a ghost revisiting my old haunts. I was still so frail that I could not sit up; I recognised these places from the ceilings alone. Because of the tracheostomy I was breathing through my neck; when no air flows through your mouth and nose you lose almost all of your sense of smell and taste- the feeding tube in one nostril probably didn’t help either. I had not eaten or drunk anything for weeks; I vividly remember coffee being the first thing I had actually smelled in what seemed like years.
Being outside was a strange experience. I couldn’t taste the fresh air. I couldn’t feel the air on my skin. I could only lie flat and stare at the sky. It was almost like watching a slideshow; first slide ITU ceiling, second slide clouds and grey sky. But it didn’t matter. Getting outside was the very beginning of a long journey. Escaping from intensive care for just half an hour (which was all I could manage) now meant that the walls of my world had expanded from a bed in ITU- not by much, but they had all the same. All of these things showed the beginning of progress; and you only need to see a little to start to see a lot.
When will cough assist get a shout out? Witty and wonderful, proud of you Ed xx
I had actually forgotten about the cough assist! I’m sure that bad boy will turn up eventually. Thanks as always x
Ed you are a brilliant Wordsworth, a fantastic person and as strong as ten lions.
Great post again brooski, thanks very much for sharing x
Hey Ed,
Really inspiring and brave. As a mum of three, did your mum and dad cope? Think I’d fall apart and need sedating!?
Loving your blog xx
Thank you. At some point I’ll talk some more about how the injury affected my family. It was a pretty wild ride.
Another great post! Thanks for sharing Ed and please keep it up!
xx
Thanks Lucy, you’re the best!
Hi Ed, I have been meaning to comment after each of the last 3 blogs. This is a such a clear and open insight into your journey, which as a colleague, speaks deeply and is something that should be heard far and wide in our health system. I have so many question for you but they can wait till I can talk to you in person. Would you be happy for me to share a link to this blog in NZ. Keep writing, much love.xx
Cheers Trudy. Always happy for people to share the blog. We can try and sort out a Skype chat if you have questions for me!