While a lot of the point of this post is really to say ‘Kat the Physio is amazing’, because I definitely haven’t given her enough time yet, I feel I also need to talk a little bit more about the Tracheostomy.
The concept is great. Hole in the neck to breathe through, so no matter what they’re doing to your mouth/face, no matter how much swelling, you are still breathing fine.
I kind of wish I’d had more details about it explained to me before hand because I had no understanding of how it worked whatsoever and it stressed me out. I wasn’t in control and I didn’t understand what was going on. In fact I regularly wrote Kat messages saying that I didn’t understand what she was doing. She was very patient and explained everything to me. She even drew me some diagrams which really helped. In fact a few people drew me trachy diagrams, I have three in total in my books. At this time I think I was still falling asleep mid conversation but regardless, Kat taking the time to explain everything to me was very reassuring.
After you’ve had it in for a while they start going through the steps to take it out, weaning you off it, which can take many days. I started the process before I had to go back in to surgery the second time, but had to start again from there. It was 6 days between second surgery and getting it out. I don’t think I would have lasted much longer.
Of course you can’t talk with a tracheostomy. This is the most obvious effect of it. It goes in below your vocal chords and seals everything off – no air rushes past to make noise. Not great when you’re straight out of surgery. Also means making friends is harder (although maybe people liked me more this way).
Firstly, the tube irritated me so much. I’ve always been quite a cougher, often quite wheezy and irritated. This was like the ultimate. And you can’t cough with a trachy. You can try, and it just makes a horrible hoarse sound and just irritates more.
I also could often hear mucus in my breathing which stressed me out and I wanted them to suction it out for me but they didn’t seem too bothered. Weird.
I had a constant struggle with nurses over clearing the trachy. They have this super long suction tube which they shove miles down inside your trachy and would almost kill me with coughing for a good 15 minutes. I hated that one and it was never necessary. Alternatively, I could cough up whatever was in there and they could just suction it out the end of the tube. No dramas. But they all preferred the first and insisted on doing it. A few of my special nurses got it though. They had my back.
Every time I coughed, the trachy also pulled on the stitches holding it in which hurt, and there was often mucus and blood that came out onto my neck when I coughed which I hated so much (who would like it…)
So day 2 post second surgery it was time to take the first step with the trachy – deflate the cuff around the tube itself. This allows some air to flow through. Unfortunately this required sticking the long thing through the trachy which sent me into a tremendous coughing fit and Kat decided I wasn’t ready so the cuff went back up. This didn’t fit well with my obsession to be always moving forward, but I was tired so I didn’t complain too much. Kat also knew how much I liked to progress so she was pretty good at managing my disappointment if I ever didn’t.
The following day we did it again and I did a lot better, though lots of coughing still ensued. They also changed to a different inner tube at this point.
The funny thing is, coughing is usually a sign that you’re not ready to progress to the next step. My coughing was my body screaming for the bastard to be taken out.
The day after, it was time for the important step – the speaking valve!!! This allows air to still come in through the trachy, but it goes out through your mouth, therefore passing your vocal chords, therefore allowing you to talk. And amazingly, cough! It was a dream!!! I got the valve in and mum and dad came to visit shortly after. Kat passed them coming in as she was leaving and mentioned that there was a surprise waiting for them but she wouldn’t say what.
They came in.
‘Hello’ they said.
‘HELLO!!!’ I replied.
For a moment it didn’t register with mum. ‘Did you just speak?’ Asked Dad.
That was fun.
The second I got that speaking valve in everything felt better. I could also swallow. I’d accidentally been swallowing over the day or so before this and it felt like it was pushing mucus and blood into my nose and ears (I don’t know if that’s actually a thing but either way it wasn’t nice). But now I could swallow and talk. Phew. Usually you would only have the speaking valve on for a short period of time at the beginning but I kept mine on full time. It felt so much better.
Kat had never heard my voice. I was excited and talking at a thousand miles an hour, forgetting that as I had a huge new mound of skin in my mouth, no teeth and an entirely blocked nose, I was pretty difficult to understand. Once again she resumed the role of telling me to slow down, but for different reasons this time. One of the speech therapists was there too. When she heard my voice she asked me where I was from. People don’t usually realise I’m a foreigner! How did she mange to do it amidst my compromised speech?! She was from America, maybe expats are particularly tuned in to accents that aren’t quite British. Or maybe it was due to her being a speech therapist, I suppose she’s used to dealing with language and how words are formed.
By this stage we had all worked out that the sooner we got this thing out, the better. So after two nights with the speaking valve, it was decided it could come out. This had another implication too – that my surgeons were feeling confident that I wouldn’t have to go back in to surgery.
Taking it out was an interesting affair. I wanted Kat to take it out as she was my bestie and we’d been through so much together. But there was a nurse who wanted to have a go. Andrew was also there, my surgical clinical nurse specialist.
I’m always happy to let someone have a go, everyone needs to learn sometime, but this was one of the most heavy handed nurses I’ve come across. She was lovely, just didn’t have a very delicate touch. But Kat was there too, to help, to explain things to me as we went, to hold my hand when it hurt.
My goodness did I cough. They had to hold the trachy while they cut out the sutures and I couldn’t stop coughing. Especially when the nurse took over holding the trachy and she pushed me down on the bed with how hard she was holding it, I remember staring up in fear. Andrew seemed to realise and stepped in to do it quickly. I tried really hard not to cough, I tried to be good. I mostly failed.
In the end, actually taking the trachy out was the least difficult part. I didn’t even notice when they pulled it out of my neck, except for the fact that I miraculously stopped coughing. They told me it was out and I suddenly realised I was breathing through my mouth again. I lay there smiling, a look of bliss on my face. Kat was checking the oxygen level in my blood. All good. ‘Are you ok?’ She asked. I beamed up at her, nodded and gave her a thumbs up. It was like I was in a dream. I was floating on clouds.
They dressed the wound and explained to me that I would need to put my hand on the hole whenever I tried to talk or cough, because until it healed, I had a rather large hole in my neck. In fact I woke up during the night that night and realised that I was suddenly breathing through my neck again and needed to get it re-dressed.
So many people who saw me after that commented excitedly on how my trachy was out. They all knew how much it bothered me. This was a good day. This felt like a win.
Hole in my neck after getting it out: