Intensive Care Unit

I was completely unaware that I would end up in intensive care after my MVD. Of all the possible complications that wasn't one that I'd been informed of. It appears that is because what happened it me is unexplainable. Despite the different specialists meeting to discuss my case, they were unable to identify a possible cause for me to become so unwell 48 hours after my surgery.

I'm told that there was a lot of CSF leaking from my nostrils, I am vaguely away of that much. But I had Sarah take photographs of my wound and I posted them on facebook, sent text messages to friends and was up and about for a while before I became very breathless. I don't remember any of this and I've been told that I probably never will. I have seen the pictures on facebook and I'm still shocked that I posted them!

So, by all account I was walking back and forth to the toilet, but was having to be put on oxygen as soon as I got back to my bed. This situation deteriorated very quickly and an intensive care liaison nurse was called to come and assess me. Her assessment had me sent directly to intensive care, because I had already deteriorated so much, so quickly. I have this vague memory of trying to reassure my Mum that this was just a precaution in case I got worse. She tells me that's true, that I was telling her not to worry.

My next 'memory' was hearing voices and being scared. I believed I was being cared for by a male nurse, who, in conspiracy with another staff member, were trying to kill me. If I needed help, they would pull the curtain round and tilt the bed backwards and cut off my oxygen supply. I felt like I was trying to talk and tell this male nurse to leave me alone and to stop trying to hurt me. I truly believed that I was in danger and there was nobody there to help me.

My next memory was 'seeing' my Mum in another bed. From what I could gather she'd started smoking again and although I don't know what had happened to her, I was aware of her and another patient walking past my bed to go and have a cup of tea and a smoke! I didn't look up to see her, I was so jealous that she was mobile and able to go and have a drink. I was stuck in a bed, attached to multiple machines, including a ventilator, I was unable to speak (although I didn't know why) and this male nurse and his female colleague were trying to hurt me. I remember awful pain in my neck at one point and dreadful pain in my arm, but I believed it was the same pair causing me pain.

I then have some tiny recollection of seeing Sarah and trying to explain to her that I was in danger. But I couldn't talk! I know I scribbled some words on a piece of paper, words that I genuinely thought explained the danger I was in and that I needed Sarah to save me. 

At some point later I could hear more voices and from what I heard the staff were aware that someone had put in a complaint against this male nurse, it was a patient who was currently in intensive care and she was a retired nurse. I heard someone asking the staff to contribute to his collection as he resigned as a result of this complaint and the staff, who obviously had a lot of respect for him, wanted to buy him a really nice farewell gift. I also heard the Matron talking to someone on the phone and explaining that, over 10 years service in intensive care a nurse was entitled to a higher pay out in pension and she was advising him to push for the higher rate due to his many years service. On all account he had resigned from his post as he didn't want to face the complaint and he'd flown off on holiday to Ibiza!

Each time new staff came on duty I would sense their presence at the end of my bed and could hear low voices, though not what was being said. I interpreted this as the staff talking about me as they had worked out it was me who had made the complaint and, as a result, nobody wanted to be responsible for my care. It seemed that the person who had to take care of me each day or night drew the short straw.

ITU is a terrifying place. Not least because you can't move and can't talk, but also because your every single tiny need has to be met by a member of the nursing or medical team. You aren't given a nurse call bell in ITU as there is a nurse sat at the end of your bed 24/7 and there is a machine that will tell them if something is wrong. However, there is no machine that tells someone you need to use a bedpan or that you need to alter your position because your arm has pins and needles. Somehow, without a voice, you have to get your nurses attention for those types of things. I can honestly say, in all my life, I have never felt so vulnerable or scared in my whole life.

Being rolled over, having every part of your body washed, your bedding changed, needles and tubes inserted without being able to explain what you need and having no way of saying 'thank you' when the staff have finished making you clean and comfortable is hard. It is a living nightmare.

I had worked out that I had a tracheotomy and that I was attached to a ventilator. I knew I had a central line stitched into the right side of my neck that went straight to my heart and was being used to give me medication, blood and fluid..I had an arterial line stitched into my wrist which enabled them to test my oxygen levels every hour which was always used at the same time as them taking my temperature. I had a nasal gastric tube which was used for other medication and I was being given feed through it ever night. Other cables and devices were attached to me, though I had no idea what they were and because there were just so many tubes and cables, I found it almost impossible to move!

I have the most amazing memory of being in a garden, with a small gate and being surrounded by the most beautiful, colourful flowers and hearing a voice. Someone was giving me a choice whether I lived or died. I remember saying that there was no way I could leave Harry and that I had to live. From that moment I seemed to be back in a very real state and could understand what people were saying to me. I also remember opening my eyes and Mum being stood over me, holding my hand. I was so, so pleased to see her and she kept kissing me and telling me how special I was. She also told me how unwell I'd been and that I'd been in an induced coma for over a week. Apparently one of my lungs had filled completely and the other was half full and gradually still filling up. I'd been ventilated to try and let my body rest and start to heal. In that time I'd had a total blood transfusion, several different antibiotics as I had an unidentified infection, I was catheterised, had tubes and lines put in and I'd even had my monthly period without knowing!

Getting off the ventilator was a slow process. Despite my determination to breathe each time they reduced the level of assistance I was getting, it is impossible to make your body do something it is unable to do! On a few occasions I'd had the level of ventilation reduced, fallen asleep, only to find it had been put back up while I was sleeping because my oxygen levels had fallen. I was so frustrated when this happened, but just kept telling myself to breathe and expand my lungs as much as I could.

I kept getting a lot of pains in my stomach and I was convinced it was due to the feed they were giving to me. I was also being given different laxatives and found out that the feed I was on was a fibre rich feed! I knew that the inevitable was going to happen, but had no way of communicating this to anyone. Being incontinent over and over again because I had no control over using a toilet and it was like passing water. To make me even more embarrassed I had to wait until there was another nurse free, so that 2 of them could clean me, change my bedding and hospital gown while all the time making sure my tubes and cables were all secure. Nobody ever complained, even though we all knew that it wouldn't be long before it happened all over again.

Tracheotomy suction is horrendous. You feel some looseness in your chest but there is no way a simple cough can clear it when you have a tracheotomy. In order to cough, I needed a nurse to put a long tube down my trachy so it suctioned whatever I managed to cough. The whole process was something I dreaded. It made my whole body shake as I coughed so hard by the tubing being put down to my lungs and I knew that this would have to happen approximately every hour, or more sometimes. I realised that every time I had mouthcare with the small pink sponges the small amount of water on the sponge would trickle down my throat and was obviously irritating my lungs and always made me need to cough. Together we worked out that if I patted my chest it meant I needed to cough and my nurse would come with the suction tubing and help me cough. I will never forget that feeling and how my whole body reacted to the procedure.

I missed Harry, Sarah, my home, my things, my bed and just being surrounded by my belongings. Harry had drawn me a picture and I had that, along with some photographs stuck up around my bed. I used to lay there looking at him, telling him that Mummy would be coming home soon. However I had no idea how long that would take and I feared it would take months.

Eventually I was needing less and less support from the ventilator. I could feel that my chest was rising and falling when I was breathing and not because the machine was making it do so. I was helped to get out of bed and into a chair, even though it was for a very short time, I was thrilled that I'd managed it.

Once there was talk about removing my tracheotomy I was pushing and pushing for that to happen. By now I had a note pad and a pen and was asking/writing lots of questions and I was desperate to be free from all the tubes and wires. But I was constantly reminded that it wasn't wise to rush and to get there slowly. On the day the tracheotomy was removed I was scared but determined to be OK. Once it was removed and a dressing applied the staff asked me to say something. I just managed to say 'Thank You'! Coincidentally, it was the same day that we'd planned with the staff for Sarah to bring Harry in to see me. Seeing him was amazing, but I was also able to talk, albeit very husky and hoarse. He cried when he had to leave, but it spurred me on to push even harder to get better and to get home!

Later that same day Mum and Pete came in to see me and during their visit I was able to tell them all about the attempts to hurt me, the fact that she'd been in one of the beds and was able to walk and talk and that I had made a complaint and a male nurse had left because of me. I explained that I knew nobody wanted to look after me because of the trouble I'd caused. I was in such a state and it was at this point that I finally cried. One of the ITU Consultants had heard some of what I'd been saying and he came over to tell me that It is a well documented fact that a lot of people suffer with ITU psychosis. People have reported seeing tigers, seeing people and various other things that aren't possible. Although I truly, truly feel that these were my experiences and my memories, the rational mind knows that none of it is true. The day I thought I had written some notes for Sarah so she could make a complaint hadn't happened as I'd remembered. I had tried to write, but I was too unwell and Sarah had been given the piece of paper. I'd tried to write it with a member of staff helping me. I have that piece of paper and it is very difficult to read and I'd only attempted a few words, which meant nothing. There had been no male nurse, I hadn't managed to write down what was happening so a complaint could be made, Mum wasn't a patient in ITU and there certainly wasn't any conspiracy to try and hurt me. What I thought were whispers about me and nurses protesting about taking over my care was simply the nursing staff taking hand over from the previous shift and doing so discretely. 

To this day, these thoughts and 'memories' haunt me and the feeling of being completely vulnerable is one that I will never, ever forget.