The second trip to the ward in 3 days…

When I was transferred to the ward for the second time in 3 days, I was back in a shared ward. Thankfully this time there was no one wailing all night like there had been the time before (I remember writing to my nurse saying ‘just give her sleeping tablets and give me sleeping tablets and all will be well. I’ll meet her in my dreams and calm her down’).

My doctors came to visit me and they said I would be moved into a private room the following day. Aah thank goodness. They checked the flap and I thought Deepti looked concerned so I asked what’s wrong. She said there’s no concern, she was just tired. Poor thing, I can imagine. My goodness these guys work hard.

Once again I thought my trachy was choking me. I was struggling to breathe and I was coughing a lot (it really irritated me, have I mentioned?!!). I wrote down a long note to the nurse, Rose, about how it was my first night and I was feeling stressed about the blood running from my nose and mouth and thought I might be being choked. She was amazing. She put my mind at ease immediately about the choking. And she taught me all about ‘suctioning’ which involved sucking the saliva out of my mouth that I couldn’t swallow (the trachy didn’t allow swallowing). Since at this point my saliva was pretty much just blood, it was nice to suction it for a bit instead of waste another box of tissues.

When it was bed time, I tried to get comfortable and sleep but I couldn’t deal with letting the blood just go everywhere so I was trying to catch it all the time. This meant no time for sleeping. After a few hours, Rose came in and suggested some sleeping tablets. YES PLEASE!

I think they managed to get me about 2 hours of sleep before a cleaner decided to burst in and started trying to clean the floor at about 4am.

When my doctors came to see me the next morning I was a mess. I had cleaned up my face but my gown and bedding were covered in blood and I was feeling pretty damn low. They ordered the nurses to clean everything, as well as change the dressing on my trachy. They also told me that at around 11 I would move to my own room.

I can tell you, by the time I was settled in that room, I felt like a different person to what I had been that morning. I even had my own bathroom! Amazing.

I was so happy to find out Rose was my nurse again the following night. In my mind she was my guardian angel. I knew she would protect me, put me at ease if anything was wrong, help solve my problems. She was also just one of the sweetest, loveliest, most awesome people… I am very grateful I had her that first night in particular, but also for two other nights too.

Last day in ICU

I had a very odd nurse that last day in ICU. She kept grabbing me by my painful cannula arm (like literally grabbing my cannulas) or grabbing me by my shoulder injury. At some point she managed to hit me in my swollen face and instead of just trying to apologise she tried to grab my face. I pushed her away. I feared slightly for my life.

I asked if I could go to the bathroom. I don’t know why but they wouldn’t let me walk there. So they brought me a portable one. She insisted on getting me sitting on it and said ‘would you like me to leave and give you some privacy?’ I nodded profusely. She then proceeded to keep pottering around my room doing things. After about 5 minutes I grabbed my book and wrote ‘are you going to leave and give me some privacy for a bit?’

‘Oh not now…’ she replied.

I didn’t get it.

After about another 5 mins she left.

I’m a very private person. I really am not ok with doing these things in front of people, which I think is fair! Though I did manage to deal with the fact that more people than I feel comfortable with saw me naked in this time but there wasn’t a lot I could do about it.

Apparently I was getting moved out of ICU that afternoon. We took final bloods from my arterial line and then took it out. One less thing in me to worry about!

We packed things up and I waited. As we were finishing gathering things, someone poked their head through the door to ask my nurse something.

‘Jen?’ I heard through the door and looked up.

It was Ronnie! I didn’t think I would get to see her again!

She came and sat next to me and held my hand. I felt like crying, I was so happy to see her face!

She was confused as to why I was back in ICU, as last time we had seen each other, it was Friday morning and I was heading out of ICU and into the ward. It was now Monday, and I explained how between then and now it had all gone downhill and I had ended up back in surgery. She got worried it was because of the Doppler going missing during her shift. I assured her it wasn’t.

What a fortuitous accidental re-meeting! It was seriously like a breath of fresh air seeing her again. Ronnie, you made my day!

As she was leaving, someone else came in and informed me that the blood taken that morning had been lost. This isn’t even the first time I’ve heard this. Unfortunately now, my arterial line was gone and this meant that I was going to require needling. Great. My favourite. And it was necessary to get these bloods in order to to be allowed back into the ward.

Amazingly, after about 5 attempts, we finally got some blood. Phew. 5 attempts is stressful and painful though.

And right on time, the porter turned up and it was my time to go zooming down the corridor and back up to T6. Back into the ward. I could only hope that this time I would be there longer than one night.

At this point it was Monday. 2 days post surgery #2. The swelling was starting to come up.

The second trip to the ICU…

Second time in ICU, I had my own room. That was quite nice.

The first night, when I had just come out of anaesthetic, I was propped up really high in the middle of the room in this very uncomfortably set up bed, connected to a hell of a lot of monitoring devices I didn’t remember having the last time (though I didn’t remember a lot), I was facing the door with a window out into the bright corridor, which in my mind was a big tv with white noise on it. I couldn’t work out what the purpose of it was. It felt a little 1984. There was a nurse there with me all night. I was frustrated she wasn’t very helpful (though the nurse who took over for her break was lovely).

This time around I was still very tired but I was mostly able to stay awake when people were talking to me. The physio team came to visit and we started again from the beginning – first day, get out of bed and sit in chair.

More complaining about my catheter, more problems with my trachy, more frantic writing in notepads and frustration with not being able to speak.

My veins started to burn badly whenever anything went into them. Standard. I had a push-for-pain button dispensing morphine which they kept telling me to use more, and it took me a while to realise why I kept having this terrible pain in my wrist, then I realised it happened whenever I pressed my pain button. So I stopped again.

Then they needed to give me some magnesium and it was agonising in my veins. I couldn’t stand it. They brought in the pain doctors, and they came up with a brilliant plan – local anaesthetic in the vein first, then the magnesium. It sounded amazing. They left a bit more for later, as I had to have something else too. When later on turned up, they tried without the anaesthetic and IT HURT. My nurse went to talk to the pain team again so they could administer the local, and they said no, they can’t do it more than once. I was very confused since it was the same person who said both different things. Eventually we pulled him up and he agreed to administer it once more time and off we went.

So that was all very weird. Good twin, evil twin?

Enter my awesome night nurse Victoria. At this point, I was in a cabin like at school camp. Outside was not the corridor of the hospital, it was a covered outdoor walkway. I was in a row of cabins and there was another row of cabins running perpendicular to ours. They were all dark brown. I’m trying to think where in my memory this came from. I’m thinking maybe Galston Gorge… Not that it means anything to anyone, but it’s nice to challenge my brain.

I think Victoria was like a camp leader or something in this game. We chatted quite a bit (voice/pen style). I mentioned that I had been taking sleeping tablets and wanted some before bed. She looked on my file I think and there weren’t any listed. So she called her friend the doctor. James was awesome too. Being the control freak I am, I like to know all the meds I’m on. So firstly he jumped on the computer and wrote down for me all of my drugs and what they were for. Then he prescribed me some sleeping tablets.

I also mentioned the pain thing, and he said he knew all about that and had actually been a part of the discussions. He said he understood Louis’s (the local anaesthetic guy) reasoning for not giving any more. While I still didn’t understand it at all, having it confirmed by this lovely lad was kind of reassuring somehow.

James was another camp leader by the way.

Victoria got me my meds and I slept. I woke up at 3am and she asked me if I wanted her to give me a clean. I was tired and out of it and didn’t really understand and wanted to sleep so I said no and went back to sleep.

I woke up a while later feeling horrible and realising everything was covered in blood. I rolled over and said ‘would you mind that clean now?’ I realised that it wasn’t actually Victoria but a girl who had taken over from her on her break. So she agreed, and started by trying to break off the scab on my lip, presumably thinking it was dry blood or something. I shouted at her on paper to be careful and she decided we would wait until Victoria returned. When Victoria returned she knew exactly what to do and got to work. They also changed my sheets while I was still in the bed! Magic. The break girl clearly wasn’t enjoying being there and she was being really rough and rushing and pulling me around a lot and hurting me. Victoria told her that if she needed to be somewhere else she was fine to finish up on her own and break girl left.

She changed my gown and cleaned me up and I felt a lot better.

Enter the start of my nose and mouth bleeding nonstop. And of course I couldn’t close my mouth because of the swelling so I was constantly dribbling blood.

The next day my surgical team came in and we talked about the cannula pain. In my mind this conversation happened in a board room, and my doctors were like a panel. They decided they should be able to switch everything to be given through the NG tube (feeding tube) and hopefully eventually stop using my cannulas. This was absolutely music to my ears. Also, it appeared I would be moving from ICU into the ward that day, which felt like progress, though the constant bleeding was really getting me down.

Taking stock of the damage post surgery #2

So when I woke up from surgery #2, it seemed like a good time to take stock of what had happened to me over the past week, physically. Let me relay it to you.

So in the original surgery, they took the bone, some muscle and the blood supply out of my shoulder/back – the outside of my scapula. That had given me a lot of pain. I hadn’t seen the extent of it yet at this stage, but when I did see it, it’s actually smaller than I was expecting. It also stretches up into my armpit. Geez, what’s with these surgeons doing such good job that I don’t get the huge battle wound I wanted?!

To make up for it though, after the second surgery I had a decent scar forming on my lower left leg.

I also had an impressive throat slit, from just near my ear to pretty much the centre of my neck. It’s quite hidden by my chin though (but that might be somewhat due to the swelling). My surgeon considers the aesthetics important, and makes an effort to fit scars in with natural lines. So this one would sit where a natural neck line would, if I had any. Of course I also have the scar from my arch nemesis, the tracheostomy.

I was incredibly happy to find that they had managed to do the surgery without cutting my face or my nostril at all. Apart from the massive amounts of swelling which should eventually go down, I should have no obvious outward differences.

These guys are seriously amazing.

Of course this isn’t mentioning what was going on in my mouth and nose, but we’ll get to that in due course.

Friday turns to Saturday and back into surgery we went

I’d been having regular checks of the flap (the new roof of my mouth made from shoulder) – they would look at it, feel it for temperature, then use a ‘Doppler’ machine on it, which would amplify the sound of its pulse.

Somewhere over the course of Thursday night the Doppler machine got misplaced. When it was found again on Friday morning, it was no longer registering a pulse and the Doctors were called in. They looked at it, felt it, and decided that it looked healthy and should be fine. So the Doppler machine was abandoned and I was transferred out of ICU (which they had bee threatening for a couple of days) and into the ward.

I didn’t sleep much the night – there was a lady wailing in the bay across from me. I had my flap checked either before I went to sleep or at 2am, I can’t quite remember. All good.

When they woke me up at 6am to check it, something felt different. There were these bits at the back which felt really soft and squishy. The nurse looked a little alarmed but said nothing.

It was at handover that he said something (8am) and my Doctors were once again called in.

The verdict was that the flap was dying and we had to save it. This was a Saturday. My main surgeon was on holiday, but the rest of my team hustled from whatever they had planned on that Saturday and before long I was meeting them in the anaesthetic room in their fetching maroon scrubs. Thank you all for giving up your Saturdays for me. I suppose it’s always a risk when you’re doing such important work. Gosh, what if you were hungover! Maybe these people don’t get hungover.

I hadn’t enjoyed anaesthetic the first time at all, but I had at least had a really nice experience going in to it. That wasn’t the case this time. For a start, I think we were all in a hurry to get the surgery underway. Unfortunately my cannula had come out of my hand as I washed myself before surgery, which left the anaesthetists needing to find a new vein to use. My veins were being as difficult and as painful as usual, and they just kept poking and poking. As was the case very often while I had my tracheostomy, I was also having coughing fits, which they interpreted as me panicking, and they were trying to tell me to calm down, which wasn’t helpful (this sort of thing happened a lot – coughs don’t sound like coughs with a trachy in, and I couldn’t talk to anyone to explain).

So they sedated me, which I hate. So I was coughing, feeling drugged and dopey, and in pain from their needling attempts. Never had I been stressed or anxious though so I’m not sure what this was meant to achieve. Then someone decided to try and numb my hand and without asking or warning me, they sprayed this ridiculously cold stuff on my hand which felt like it was burning me. I was screaming in pain, though lucky for them I wasn’t actually making any noise. Amidst the pain in my hand, someone must have shoved a needle in and anaesthetised me because the last thing I remember was feeling drugged and being in excruciating pain. I guess the ‘numbing’ did the trick, if only to at act as a type of pain diversion.

My dad describes my first surgery as the second longest day of his life, and the second surgery as the longest. They had said probably a 3-5 hour surgery (time depending on what they found to be the problem). It was midday when I went in. My parents had been staying with a friend in Surrey, so they decided to hang about in the city during the day to wait for the surgery to be over, and to be with me when I woke up. 4 hours passed, 5, 6, 7… they were sitting in the pub trying to have some dinner and had heard nothing… At about 10pm they got told the surgery was over and I was out.

They found out that a clot had formed in the blood supply taken from my shoulder and put in my neck, and they had to go into my leg to get a new one and bypass the original one in my neck, hopefully getting a blood supply to the bone and tissue before it was too late. This sort of fail usually happens within 48 hours, not 5 days. They didn’t know why it had gone that way with me, but they hadn’t seen it happen so late before.

Waking up from this surgery, I was a lot more alert. I don’t know if that was because it was a bit of a shorter surgery or what. But I came to, and heard people talking, and with my most recent memory of having been in so much pain and sedated, I made sure I lay still and pretended I wasn’t awake. I didn’t want the torture people to know I had woken up because otherwise they might start torturing me again.

Then I heard my mum’s voice and called out to her. I figured if I could only get to her then it would be ok. She would save me from the bad people. So I shouted and shouted but nothing came out – what else had these people done to me?! I don’t know how but suddenly mum was next to the bed. My eyes were glued together, as was standard most mornings for the time I was in hospital, and apparently post surgery too. I managed to pry one open and I saw her and I reached out to hold her hand. It would be ok now. I pleaded with her to stay with me, but of course it was quite late and they had to make sure they didn’t miss the last train back to Surrey. Aah yes. That brought me back to reality a bit more, and I understood that I was in hospital and they had a train to catch. So I told them to make sure they left themselves plenty of time. I think they left soon after that.

In my hindsight mind as I write this now, I went through this all with conversation, but of course I didn’t. When I called out ‘mum’ and suddenly she was there, my mind fills in that I said her name so she came by me, but of course it doesn’t work in that way. I do remember trying to communicate with mum and dad using a laminated sheet of paper which was like computer keyboard, pointing to the letters I wanted to use.

I had quite a sleepless night. I remember lying in this uncomfortable bed with my feet touching the end of it, looking out into a bright light. I remember getting angry at my nurse because I didn’t think she was being very helpful. This time around I was in my own room, and had a nurse posted to stay with me all through the night.

A few of the amazing nurses on my first trip to ICU

The first thing was to work out a way to communicate with people. How else would I make friends?

The first notebook Dad got for me said on the front ‘Be your own kind of beautiful’. Seemed fitting, since I would definitely be challenging the normal ideas of ‘beautiful’ for some time (someone did just tell me I was totally rocking the look hehe – the ol swollen face look).

The scribbles start to make sense after a few pages, as the initial anaesthesia wore off. I was never far from my felt-tip pens or notebook. In fact everything was covered in pen – my arms, my sheets, my gown, at one point I even managed to draw on my Physio.

After the first couple of days of confusion, things got a bit clearer. I was helped through by some amazing people as I was recovering in the ICU.

Anna was the Portuguese nurse from Porto. I promised her that once I was better I would prioritise visiting her home town. She said to drink their special ‘Porto wine’, I of course agreed. I realised later we were talking about Port. Yes please, I will drink it all.

Then Maria took over. She was lovely. She had a brilliant knack of explaining things to me really well as she was doing them, putting me at ease and making sure I was informed about everything that was going on. This appeals to me so much. Looking through my conversation book from Maria’s shift, it appears I finally managed to work out the reason as to why my neck was sore – something that had been plaguing me – of course, they made quite a big cut in my neck to connect the blood supply, I’d known his all along but for some reason this was when my re-realisaion epiphany happened. I also wrote ‘Elephant’ and underlined it, so I’m sure that was important. The lovely Maria also came and popped in at another time, a few shifts later, she crouched by my bed and held my hand. She was great.

Then there was the amazing Rebecca, with a pixie haircut that gave me massive hair inspo, beautiful straight teeth, a great smile and very pretty eyes. It was Thursday, day 3 post surgery. My memory of my day with her is surrounded by sunshine. We put the radio on in the morning and had it going all day, managed to find a station that was just playing an awesome mix of retro songs. We boogied through the day and she would pop over to come have a chat/write with me. She also knew Sydney, which was fun. When she went on her break, she had a tea on my behalf because we drink it the same way. I got up and danced to the radio as my bed was made. Kat the Physio came by and decided it was time to go walking! So I got all my lines and drains bundled up and with Kat on one side and Rebecca on the other, Clarence under one arm and my parents as cheer squad/photographers, my support crew and I went thundering down the corridor. I, of course, was certain I was fine and was trying to do everything myself and quickly. It became a common theme of my friendship with Kat that she would spend a lot of time telling me to slow down, calm down. I appreciated that. I need these sorts of reminders when I’m not well. Later in the afternoon after everyone had left, Rebecca and I went for another walk. We danced down the corridor, and she took me on a short tour of the floor outside of our ward. We recommended each other our favourite Ramen places (Kanada-ya: mine, Koya: hers). I told her my legs were randomly itchy and she said it’s a side effect of the morphine and that I had a drug on my file that would counteract that! Brilliant! I was sad when her shift ended, I’d had such a fun day.

I was lucky however, as it wasn’t long until I met Ronnie, who took over from Rebecca, and had actually been there that first night with me in the ICU as I was coming out of anaesthetic. I didn’t really remember of course but I wanted to know all about it. Well, I was distressed and thought I was being choked (start the 11 day obsession with getting rid of the thing hat had been choking me – my tracheostomy). Apparently I was so stressed they got someone in to have a look if there was something wrong with it. Nope nothing wrong, but my body did think this new invader was trying to kill it. Anyway, we chatted and learnt about each other as she pottered around doing her work tasks (entertaining me was obviously the number 1 task). I wrote out my ‘list of demands’ that I wanted her to fill for me before bed (cheeky). In the morning, she cleaned my eye for me and put ointment and drops in it, and for the first time in 3 days we saw my left eye!

During this whole time I was in a shared ward, though our bays were big. The room felt so different with each person who was looking after me in that time that in my mind, each time the shift changed, I also changed location. This of course didn’t happen, but it could have! Someone could have been trying really hard to mess with me!

At some point someone described me in this time as a ‘big personality’. Just goes to show that you can be dopey and not able to speak and still get yourself across.

The wonders of anaesthetic

Anaesthesia isn’t for me. Though I’m not sure 16 hours of it is really for anyone. But to be fair, I had a fun time going in to it.

But I’ll rewind a little. I had stayed in the ward on the Sunday night before my surgery. They had taken out my PICC line a few days before and assured me I’d had my last bloods. Turns out they wanted more, which of course ended up with a couple of people having a couple of tries and fails each. Always a pleasure.

I met Debbie who worked in ICU, who invited me to join a study to help detecting infection earlier in bloods. I said as long as it doesn’t require any extra stabbing, she could count me in! So in I was, and she informed me she would be popping in to take blood from one of my lines over the course of my stay in the ICU. Great, always happy to help. And also happy to have a familiar face I’ll see on the other side of the surgery.

Checking in took forever and we missed dinner. So once it had all been sorted and I had a bed, Dad popped out and got the three of us Honest Burgers, which we then ate in my hospital bay. Sorry other inpatients, my dinner is better than yours was.

I made my first friend that night – one of the nurses, Kirsten I think was her name. We chatted as she sat waiting to see if the aggressive shouty old lady in the bed across from me had fallen asleep (the lady who had shouted ‘hello’ at me earlier as I walked past and asked the nurse if I were boy or a girl).

After my last solid meal, I had to ‘carb load’ and have some special drinks at 8pm and then before 6am. So I got woken up at about 5:30am and I had my drinks. Then I had to have a shower with some special gel and put my surgical robe on (I found out later that I had it on backwards). I saw Deepti had come to say hi quickly before surgery, which was amazing, and I also met the… uh… Like anaesthetic registrar or something? I don’t know these terms. But she was awesome too. I felt settled as soon as I saw Deepti, and I was rushed by an orderly to put my special socks on as it was time to go zooming down the corridors to the theatre!

I went in and the girl I had just met came with me, and I met someone else who I think was maybe managing the theatre? Did I make that up? Anyway, he was awesome (and alerted me to the backwards nature of my gown. He was going to leave the room so I could change but I just pulled my arms in and spun it round and pretended I had it right all along).

We chatted as she prepare all the drugs they were about to give me, and people were zooming in and out. I was in a little room, lying on a bed-type thing, just off the main surgery room. Occasionally my people would pop in and say hi, or any other staff would be running around, all in maroon scrubs, all cheery. I was having a great time. I got little snippets of view through the door as people came in and out, that alerted me to what I was about to go in to. They had a big meeting in the other room, then it was go time.

I don’t remember there being a massive issue with cannulating me, though I feel like there might have been a few attempts. I don’t remember any counting down, nothing like that, I just don’t remember anymore.

The next couple of days were a blur. I woke up with a catheter, two cannulas (one in my hand, one in my groin), a tracheostomy (breathing tube in my neck which meant I couldn’t talk), a feeding tube in my nose, a sore shoulder, a very swollen face and a lot of confusion.

I remember my doctors coming in and having the same conversation with them about 3 times (either they were trying to mess with with me or I was hallucinating/dreaming… I feel like they probably didn’t have time for the first option so we might have to settle for the second). I remember not being able to work out that in order to stop the pain I had to find a specific cord that had a button on it and then I had to press that button in order to cause a series of events to happen that resulted in the pain apparently being better. I remember thinking it was the middle of the day, getting up and sitting in my chair and asking why no one had told my parents I was awake (turns out it was midnight and they had already come to visit). I remember my parents later telling me they had seen me when I woke up from surgery but I have no recollection of seeing them then (apparently I was quite preoccupied with the pain in my shoulder). I remember the catheter causing me loads of pain. I remember having no end of problems with my tracheostomy, thinking I was constantly choking (which went on for the whole 11 days I had it). I remember falling asleep constantly, mid conversation, whenever.

I think it was about 2 days post surgery when I started to get a little bit more sense. But we’ll save those stories until the next post.