Big Fella’s birthday nightmare

I feel like I’m jinxed. Every time I start feeling a bit better and dare to make plans then the Universe decides it has other ideas and it all goes wrong. It really does feel like my body is trying it’s hardest to kill me, or at the very least kill the last shreds of my sanity that I’m desperately trying to cling to. 

During this week it was Big Fella’s birthday. The team on the ward had worked really hard to make it possible for me to have day release from the hospital, juggling the times of my antibiotics to give me the maximum time possible at home and arranging for me to have doses of ketamine (a controlled drug) to take with me. 

I had emailed Big Fella’s school to tell them he would be having the day off so that we could have some quality family time together, which has obviously been in short supply over the last 9 weeks of me being in hospital. I had the day all planned out: my IV meds and antibiotics would be finished by lunchtime, Hubby and Big Fella were coming to pick me up and then I was taking him shopping for some new trainers and clothes. (The kids hate shopping with Hubby as he insists you can buy a decent pair of trainers for £50 but I know that a pair of Nike Air Force are going to set me back well over a £100. And we all know when you’re a teenager it’s so important to have the ‘right’ trainers or branded T-shirt). After shopping we were going to see Hubby’s parents, pick up my nephew and then go to our house to open presents and cards, sing Happy Birthday, let him have his giant Millie’s birthday cookie (neither of my kids like birthday cake!) and then go out for dinner at Prezzo before going to the cinema to see the Jurassic World movie. I would get back to the ward about 10.30pm and I knew I would be exhausted and probably suffer for a few days but it would be worth it. I was so excited. 

But after reading the opening paragraph of this blog post you can probably guess that the day didn’t quite pan out like that. In fact, the day was so awful that I didn’t even get to see Big Fella at all on his birthday and it broke my heart. 

The day before his birthday I had been feeling good. I had done some yoga and meditation during the day, completed a cross stitch and had even made tea for the nurses at the start of their night shift. I had worked out that I had been in hospital for half of his birthdays and I couldn’t wait to get home and see my boy and celebrate this birthday properly. I remember waking up in the night at about 3am or 4am feeling absolutely freezing cold, so I closed my window and went off to the linen cupboard to grab a couple of blankets. 

The next thing I remember is that it’s about 11am and I’m waking up to find Hubby sat by my bed. I had no idea what he was doing there or even what day it was. 

Apparently by the time the nurses came to do my obs at around 5.30/6am I had a temperature of nearly 40 degrees, had rigours (where you shake uncontrollably) and was pretty poorly. But the nurses tell me I was refusing any medical treatment and hiding under the blankets ‘because they will see me’. I have absolutely no memory of this and everything from this point onwards is based on what the doctors, nurses and Hubby have told me happened. 

Worried that I was going septic the nurses called for the doctor to come but when she arrived I apparently continued to refuse treatment and wouldn’t even be touched. I continued to hide under the blankets and repeatedly stated that I had to ‘stay hidden because otherwise they will see me’. Worried that the Picc line in my arm was now infected in the same way my Hickman line was previously, the nurses took down my TPN and antibiotics that were running through it as continuing to use it would mean pumping the bugs further round my bloodstream and making me more unwell. I think they somehow managed to get me to poke my arm out from under the covers in order to be able to do this but I have no recollection of it. 

By the time the day team came on shift I was getting to be a bit more vocal in my refusal of any treatment. I think they obviously realised that I was seriously unwell and that my sky high temperature was causing me to be delusional and hallucinate. At this point the ward Sister called Hubby and asked him to come in, partly because they were extremely worried about me but also in the hope that he would be able to placate me. To stop the sepsis from getting worse they needed to remove the Picc line from my arm. This is a really simple procedure, done on the ward by the nurses and literally only takes a couple of minutes. They also needed to administer medication like paracetamol to try and bring my temperature down but seemingly I was having none of it. 

The nurses tell me it was at this point that I locked myself in my bathroom and refused to open the door. By the time Hubby arrived they had managed to get it open and he told me he found me curled up in a ball on the floor in the corner of the bathroom, terrified that the staff were trying to hurt me. I find this idea so alarming as everybody knows that I absolutely love all the nurses on the ward and they’re like a second family to me. For me to believe that they were going to do anything but make me better is a completely alien concept and shows just how poorly I must have been. 

Hubby said that I was refusing to have any medical treatment because I believed that if I did something bad would happen to the kids. It must have been completely terrifying having all the doctors and nurses trying to look after me to make me better while all the time thinking that if they did my kids would be harmed. It just goes to show what effect serious infections and high temperatures can have on both the body and the mind. 

The Critical Care team were called out and Hubby persuaded me to let them listen to my chest and do some other basic examinations. I think it’s testament to our relationship that even though I would have completely believed whatever was playing out in my mind- that me and the kids were in danger from the doctors and nurses- that I still knew that Hubby loved me and that I could trust and believe in what he was telling me. That this love over-rode the illogical madness I was experiencing. 

The nurses have teased me good naturedly about the amount of screaming and shouting I did that morning and about the fact that security even had to be called at one point. I’ve apologised profusely, despite having no idea what I’m actually apologising for! 

When I woke late morning, my temperature had gone down and I was tired and confused but no longer hallucinating. I had a terrible headache, the light hurt my eyes, my throat was sore and I felt battered and bruised all over as though I had been in a fight with Tyson Fury. I hadn’t been in a fight with anybody but it was obviously the pain from my muscles making me feel like that. 

The doctors said that if my temperature spiked again that my behaviour could return to being erratic and me being delirious so I think they wanted Hubby to hang around for a bit to help if that happened. It wasn’t until a little while later that I realised that it was Big Fella’s birthday. I tried to get out of bed, to get dressed to go home but Hubby said that I couldn’t, that I was too poorly and it would be dangerous for me to leave the hospital. I tried again to get up but was so poorly so instead just sank into Hubby’s arms and cried and cried. 

I was so determined that this year we would be at home, all together to celebrate his birthday. I thought last year was awful only getting to spend an hour with him in the hospital day room but little did I know that I would have seen that as a win this year. Hubby said that he would bring Big Fella in to see me for a short visit before they went to the cinema so I would at least get to see him and wish him Happy Birthday in person (the cinema is about 5 minutes from the hospital for those not local to Nottingham). 

Luckily my parents had taken Big Fella out for a birthday breakfast but I will always feel guilty that he woke up on his birthday completely alone in the house. Hubby left around lunchtime to spend some time with him and try to make his birthday as normal as possible, happy that I had stabilised and was now complying with all treatment. It must have been awful for him too, wanting to be at home with Big Fella when he woke up on his birthday but being called into the hospital in an emergency. I hate what my family has to go through because of me and my illness. Being married to me and having to deal with the effects of my illness must be like being on a rollercoaster that you never wanted to get on and then not being able to get off and having to just accept that you’re going to go round and round, having dizzying highs and earth shattering lows, for the rest of your life. 

I must have slept for a couple of hours and then the next thing I know is that I’m being told that I’m going down to theatre to have a new central line placed in my neck, which would look something like the picture below.

This would mean I could continue to have my TPN, but more importantly, IV antibiotics to get on top of the sepsis. The anaesthetist that would be putting the line in came up and consented me and one of the student nurses helped to get me out of my pjs and into a hospital gown. She had to help me take the 3 steps from my bed to the loo as o felt as though I was going to pass out. I had no strength in my body at all. 

Just before the porters came to take me down to theatre just after 3pm one of the Critical Care nurses came to check on me. Although I was clearly still very unwell, she was happy that I was obviously doing much better than I had been that morning. Before she left she did a covid swab as they’re now not routinely done. They used to be done twice a week up until a couple of months ago but I guess covid isn’t as much as a ‘thing’ as it once was, even within the hospital. A couple of weeks ago the rules were changed and now masks don’t have to be worn in non-clinical settings like corridors and offices. 

The theatre lifts were still out of order so we ended up having to take the longest ever route down to theatres. I was wheeled straight into the anaesthetic room of Theatre 3 which is the small room where you get put to sleep before going into the actual theatre. The student nurse had accompanied me as all patients going to theatre need a nurse to handover the notes and any relevant information. Usually they go back up to the ward but the anaesthetist was confident that the line insertion wouldn’t take long so invited her to stay and watch. She’d never seen a line being inserted before so she was eager to stay. 

Having a central line in your neck, also known as a jugular line, is not the most pleasant experience as I’m sure you can imagine. It’s done using local anaesthetic so you’re awake for the whole thing. The local numbs the area so you don’t feel the sharp needles but you do feel them pushing, pulling and tugging to get the line in the right place. They use an ultrasound machine to scan your veins and to guide the insertion, first passing a guide wire down the vein, then the line before removing the guide wire and stitching the line in place so it doesn’t come out. 

I’ve had quite a few in the past but last year I remember them trying to put one in and they couldn’t for some reason. Luckily, this one was pretty straightforward and it only took about 15 minutes. All I needed now was a chest X-ray to check the line was in the correct vein and the tip (or end of the line) was in the correct place and I would be going back up to the ward. 

But all the portable X-ray machines were being used in other theatres so I was wheeled round to recovery to wait for one to become available. After half an hour the anaesthetist decided to ask them to bring the one up from A&E but we still had to wait another 20 minutes for that one to arrive. The X-ray was done and the anaesthetist went to review it on the screen and I knew straight away from the hand gestures that he and his colleague were making that there was something wrong. 

The line was put in on the right of my neck and is supposed to go in the vein that curves left towards your heart. Unfortunately this one had decided to take a right turn instead and was heading towards my right arm. The anaesthetist was confident though that with a bit of ‘a jiggle’ they would be able to get the line to go the right way. The only problem was that there was nowhere to do this as all the theatres were in use and he had to shoot off to assist on another job. So me and the student nurse were left in recovery to wait for another anaesthetist and anaesthetic room to become free. 

At 7pm the student nurses’ shift was over so she went to let the recovery team leader know that she was having to leave and that I was still waiting. While I was sat alone, I decided to have a flick through my notes that had been left at the end of my bed. These are the ones that the doctors write in and are normally kept in a big locked filing cabinet on the ward, well out of the reach of the patients themselves. It was just too tempting. I read through the notes from that morning. It was quite shocking to read in black and white exactly how poorly I had been and how disturbing my behaviour was. I read that they had been going to sedate me in order to do the tests and examinations they required and that the only reason they didn’t was because my temperature came down and I became a bit more compliant. I can only imagine how awful it would have been if they had had to do that and how terrifying I would have found it when in my septic state I already thought that the staff were trying to hurt me! I decided not to read much more because it felt like they were describing someone else, a me that I didn’t recognise and it was quite upsetting to read. 

Luckily I didn’t have to wait too much longer as an anaesthetist came into the recovery bay I was in and said that they were here to respite the line. Hurrah! They decided that it could be done in recovery as although it had to be done under sterile conditions they had all the right equipment in recovery to do it. Luckily the recovery bay I was in was self contained and had 3 walls instead of just curtains separating me from neighbouring patients. It was just unfortunate that staff had to walk through it to access the main store cupboard meaning that people were forever coming and going. 

Before the anaesthetist could attempt ‘the jiggle’ he had to numb the area again using local anaesthetic. Local anaesthetic stings like a bitch and is sometimes the worst bit of any procedure. Once numb, he had to remove all the stitches holding the line in place and despite only having been in for less than a couple of hours a couple of them didn’t want to budge! Finally he was able to use the ultrasound machine to be able to see the veins as he attempted to manoeuvre it into the correct vein but the line stubbornly refused to play ball. After about 15 minutes of trying the anaesthetist said it wasn’t going to work and that the line would have to be removed. 

I was now back at square one and was going to have to wait for yet another anaesthetist to come and try putting one in on the left side of my neck as this one was going home. As luck would have it I didn’t have to wait long before a very smiley ODP (Operating Theatre Practitioner) and a handsome young anaesthetist came into my bay and said they were there to pop me a line in. Officially they hadn’t yet started their shift but had agreed to come and sort me out given that I had already been in theatres for about 4 hours. 

When anaesthetist number 3 scanned the veins in the left of my neck he noticed that they were much, much smaller than the ones in my right, but that ‘we’d have a go and see how we get on’. Fair enough. I just wanted to get a line in and go back up to the ward. I had missed all my regular pain medications having been in theatre all afternoon and I was feeling so poorly from the sepsis. I wanted to get this line in so I could get some fluids and/or feed and some antibiotics to stop the sepsis from getting any worse. 

So the procedure began exactly as it had before. The anaesthetist scrubbed, put on his sterile gown and gloves and the smiley ODP was there to hand him the items he required and keep an eye on my obs. The local was injected, it stung, and the insertion began. But straight away I could tell it wasn’t going to plan. The line didn’t want to advance and whenever he tried to push it I felt waves of pain down my neck and into my chest. After about 30 minutes of trying, and failing, and me crying he decided that it just wasn’t going to happen and stopped the procedure. The vein was too small and there was some resistance, probably from scarring in the vein from previous insertions he told me. 

We now had a couple of options: 1) we try the right side again or 2) we put the line in my groin. It was my choice he told me and he would do what I preferred. Because of where it is a line in your groin is the location that’s most likely to get infected. And given the fact that the lines in my chest and arm had gotten infected then it was highly likely that a groin line would end up going the same way. Add in to the mix that I’m incontinent too and it’s a recipe for trouble. The right side of my neck was sore but I thought that despite that we should try the neck again and if we ran into any more problems then use the groin as a last resort. Plus in the back of my mind all I could think was that I hadn’t tidied up the lady garden and after 9 weeks in hospital my bikini line wasn’t looking it’s best. 

So we tried the right side of my neck again. And again it didn’t work. As he was trying to advance the guide wire down past my neck it was like it was getting stuck he said. I knew something wasn’t right because of the pains I was feeling all through my chest and right arm. So again we abandoned another insertion attempt.

I was trying so hard to be brave but I was struggling with the pain in my neck and my bowels had started spasming too. I needed to go to the loo and the lovely OTP said she’d take me as it was a little walk from recovery. As I sat on the loo I wondered what would happen now. Was the anaesthetist going to send me back to the ward with no line? I had been down in theatre for 6 hours by this point and I was worried that he would want to cut his losses or that he might get pulled into doing an actual operation. As I stood up I felt sick, the room started to spin and as I opened the door I nearly passed out. Luckily the OTP was there to catch me and shepherd me onto a nearby theatre trolley. With the back raised instead of sitting down she got me to lie down with my head where my feet should go which meant that my feet were sticking up in the air. After 5 minutes like this I felt a lot better and we went back to my bay in recovery. 

The anaesthetist was waiting and he’d had an idea. He said that when he was trying to advance the guide wire it was like it was getting caught on something and when he looked at the wire after he pulled it back out the bottom of it had curved and now looked like the bottom of a hockey stick. He had initially thought that he was hitting scar tissue or a blood clot but neither of those things would be strong enough to bend the wire; but hitting the Picc line would. 

The Picc line was still in place because although it was infected they wanted to get another line in place before removing it. But it made sense that the jugular line wouldn’t advance properly with it still in place as they share veinous access as can be seen in the picture below. 

The anaesthetist suggested that we take the Picc line out and then have one last attempt at putting a line in my neck. But he also gave me two other options; to leave the neck alone and go straight to a groin line or to say enough is enough and go back to the ward with no line, sleep and go back to theatres the next day to try again. Personally the latter wasn’t even an option for me. I knew I needed a line for all the reasons I’ve already mentioned and without one I would only be more unwell and more dehydrated the next day making further insertion attempts even more difficult. So did I go for the ‘easier’ option of my groin or the potentially safer bit more painful option of my neck? 

I agreed to one last try in my neck. But after so many previous attempts my neck looked like I had been attacked by a swarm of vampires. It was red, swollen and covered in blood. And so, so painful. In fact it was so bad that when he tried to administer the local anaesthetic I just couldn’t take it and he said could clearly see how distressing it was for me and how much pain I was in so he stopped the procedure. We both knew that we had tried our best but we had exhausted all access in my neck which meant that my groin was now the only way to get a line in place. 

He said he would give me a 15 minute break before beginning the groin line and that he would get me some morphine to help with the pain. I had last had some paracetamol at around 3pm and it was now nearly 10.30pm. I had missed all my tea-time meds at 5.30pm and the bedtime ones which are given at 10pm so I was grateful for a dose of morphine! As soon as the sting of the sub-cut injection wore off I must have fallen asleep immediately as the next thing I know I’m being gently woken up and asked if I’m ready to have to line put in my groin. 

By this point any embarrassment I had of not having a nice neat and tidy bikini line has well and truly worn off and I just wanted to get it over and done with. I have to say that he was incredibly respectful and did his best to put me at ease. He left the bay while I removed my knickers and did his best to keep me somewhat covered, firstly with the bed sheet while he scanned the area looking for the best vein to use and then with the surgical drape as he prepped the area for insertion. As always with me, nothing is ever straightforward. Apparently not only are my veins completely useless but the vein in my groin was sitting underneath the artery when it should have been the other way around. This would mean he had to be extra careful not to nick my artery he told me, mainly because if I bled out it would create an awful lot of paperwork for him! He was joking of course, although there was probably some truth in there too! 

We went through the same routine as before- the sting of the local anaesthetic, the ultrasound guiding the insertion of the guide wire but this time it passed up the vein easily and without any problems. The line was placed in, the guide wire removed and it was done. All that was left to do was stitch it in place to secure it. By this point though the local anaesthetic had begun to wear off but rather than have a couple more injections that sting like hell I decided it would be less painful to have the few stitches done without it. Finally after 8.5 hours in theatre I had a line! 

I have to say a massive thank you to Mr anaesthetist number 3 for not giving up and investing so much time and energy into getting a line in me. I’m pretty sure many others would have simply sent me back up to the ward knowing that I would be someone else’s problem the next day. But he didn’t do that. He saw it through until the very end. I was absolutely exhausted and pleased that it was over. The whole experience had been quite traumatic and definitely not one I would be in a hurry to repeat. I’m already worrying about the next time I need central line in the future (or if this groin line gets infected during this admission) because I honestly don’t think I could go through something like that again. 

When I got back to the ward the night nurse told me that Hubby and the kids had come to see me after the movie had finished and had waited in my room until around 11pm in the hope that I could have had a few minutes with Big Fella on his birthday. But it was 11.45 so they had long since left and I cried knowing that his whole birthday had passed without me seeing him. I had managed to speak to him very briefly on the phone before I went down to theatre but I just wasn’t well enough to FaceTime. In that moment I felt like a complete failure as a mum and I was so angry with my rubbish body at yet again ruining what should have been a special day. 

But I didn’t have long to dwell on this as there was now a flurry of activity by the nurses to get me connected to antibiotics and my feed and administering my medication through my shiny new line. 

That night despite how uncomfortable my neck was I managed to sleep, helped by the fact the nurses fetched me extra pillows and created a cocoon around my head so my neck was supported. The next day I woke up feeling like shit with a splitting headache again. My neck was swollen and painful on both sides and wasn’t helped by the fact that I had such a bad sore throat I could barely swallow. The doctors had to change all my oral medications to IV ones bar the ketamine as I was just about able to swallow the tiny 5ml doses I was prescribed 4 times a day. 

I spent all day asleep until Hubby and Big Fella popped in to see me around 8pm. They had dropped Big Girl off at netball training so had about 30 minutes before they had to go back and pick her up. But it was long enough for him to open a couple of presents, to tell me about his birthday day and for me to have a cuddle. And that was all I wanted. To be honest I was still so poorly with sepsis that I couldn’t have managed much more than the 30 minutes they were here but I was just so glad I finally got to see him. I told him over and over that I was so sorry I didn’t get home for his birthday and that I felt awful and that I would make it up to him to which he replied over and over ‘it’s fine Mum, honestly, it’s fine’. And I don’t know if it really was but I appreciated him saying that it was even if it was only to make me feel better. 

And then I got this text…

You couldn’t make this shit up, could you? So on top of sepsis I am now fighting off Covid. And you know what? I’m tired. 

I’m tired of taking one step forward and then being picked up and put a whole mile backwards by my illness. I’m tired of never knowing what my body is going to throw at me next because most of the time it’s shit it’s throwing, it’s never anything nice. I’m tired of watching my family worry about me. I’m tired of spoiling everyone’s plans or being the reason that we can’t make any. I’m tired of feeling guilty for being ill even though I know I have no control over it. I’m tired of watching my kids grow up over FaceTime and trying to parent them through What’s App. I’m tired of trying to stay positive. I’m tired of being told to be grateful for the good days. I’m tired of watching all my friends and family live their lives while I’m stuck in this fucked up version of Groundhog Day that sees me in a cycle of yo-yo’ing in and out of hospital ad infinitum. I’m tired of feeling so very alone while I battle this disease. 

I’m 

just 

so 

bloody 

tired.