Birthday fever and festive sepsis

Most people celebrate their birthdays with a nice meal out, a trip to the cinema or even with a few cheeky vimtos in the pub. What did I do to celebrate? I had a little trip up to the hospital. 

The night before my birthday as I was connecting my feed I noticed that there was what could best be described as green gunk coming out around my Hickman line. Safe to say there should not be snot like stuff dripping down my line so I knew that I would need to get it checked out. 

With pain all around my line and a full diary over the coming weeks I wanted to get it looked at asap as I simply did not have time to be ill or God forbid, have a stay in hospital, so I rang the specialist nurses first thing Monday morning and had an appointment to be seen later that day. 

I went up to the hospital, had swabs taken of the gunk around my line and to be on the safe side the nurse even did blood tests to check for any infections in my line. While I was there I didn’t say anything about it being my birthday but when I got in the car I had a phonecall and I recognised the hospital number. When I answered her first words were “is it your birthday today?” and I laughed because I knew she had printed off the labels for all my specimens and noticed my date of birth. After a telling off for not letting her know so she could sing happy birthday to me she told me she would call me when she had my test results.

I went home and because I was feeling rubbish I was fully expecting to get a phone call to tell me I had an infection. But no! All the tests came back normal. I assumed that I must have some kind of bug or virus and spent the next few days in bed trying to feel a bit better before the weekend. I had friends coming up to visit and we had made plans so I wanted to be well enough for that. We ended up visiting our (rather shitty) Christmas market and going to Wollaton Hall. At Wollaton Hall there was a brilliant exhibition by Willard Wiggan, the guy that does sculptures in the eye of a needle. There were about 15 microscopes in the room because his work is so small you cannot see it with the naked eye. One of the pieces that was there was the Last Supper and all the bowls and plates etc were individually made and it took months of work. It was a brilliant and free exhibition and I highly recommend visiting it at Wollaton Hall before it ends or checking out his work on instagram (where I pinched this photo from)

After a busy weekend I was absolutely shattered and ended up spending most of the following week in bed. I had a hacking cough and still had pain around my Hickman line, although thankfully the green snot had dried up. I assumed that I was wiped out from doing stuff with friends at the weekend and that the energy hangover combined with some kind of bug was what was making me feel so crap. I had another friend coming the following weekend with her son to visit the uni open day and I wanted to be well enough to spend time with her as I hadn’t seen her for ages. But when she arrived instead of going out and painting the town red, we ended up staying in and watching Gogglebox and I’m a celeb and talking and talking and talking for hours catching up on what had been going on in each others life. 

When she left on Sunday morning I waved goodbye from the front door and immediately went back to bed. I felt absolutely shattered and was going hot and cold. I honestly thought I might have flu because I had not managed to get my flu jab yet and I even dug out the thermometer because I thought I had a fever. Turns out that instead of a high temperature in the night my temperature went down to 35 degrees and I felt so awful I barely slept. Hubby wanted me to ring the nurse and get some more blood tests done but I was worried that if I went up there and had tests done that turned out to be negative I would look like a right tit! But given how unwell I was feeling and the fact that the pain around my line had gotten worse to the point of hardly being able to move my shoulder I decided it was probably best to get checked out. 

I rang the nurse and she told me to come in at 2pm as my gastro consultant was free to come and take a look at my line and hopefully between them both they would be able to figure out what the problem was. On a side note I have to say how lucky I am to be able to ring the specialist nurses or even the ward and often bypass a trip to the GP or even A&E, which looks more and more like a war zone every time I see it. 

I went back to bed and dozed off but when my alarm went off at 1pm I felt even worse than I had earlier. I asked Big Girl if she would drive me to the hospital because I felt too poorly to drive myself and she had to help me get dressed because even though I felt shocking there was no way I was going to the hospital in my PJs. By the time we got to the hospital and I made it to the clinic room I could barely stand and I practically collapsed into the chair. 

The nurse fetched the obs machine and while she took my blood pressure and temperature she called the doctor to come and have a look at me. I was astounded when she told me my temperature was almost 40 degrees and I was tachycardic. She took blood from my Hickman line and sent them off to see if I had an infection. I was still expecting to be going home and be tucked up in bed within the hour but the doctor came, took one look at me and admitted me on the spot. 

Unfortunately they didn’t have any beds available on F22, the Gastro and nutrition ward, so they had to take me down to one of the admitting wards. They called Big Girl and she came in and stayed with me holding my hand until Hubby arrived. 

The doctor in the admitting ward said my tests showed I had RSV (a respiratory virus) and sepsis. They needed to get me started on antibiotics straight away but because I have such severe allergies to so many antibiotics that was easier said than done. Microbiology suggested they try a broad spectrum antibiotic while they waited to find out what specific bugs the cultures grew but it was one that I hadn’t had before. So they fetched the crash cart and put it at the end of my bed when they started the IV antibiotics just incase. Luckily I didn’t have an allergic reaction but unluckily the antibiotics didn’t seem to be working. 

The doctors on the admitting ward and in microbiology both wanted to take my Hickman line out as it was the source of the infection but thankfully my gastro doctors intervened and refused. Now I’m sure you’re thinking, if it’s the cause of the infection, why aren’t they just pulling the line out straight away? And the reason is because we have to weigh up the short term risks of keeping it in against the long term risks of pulling it out. 

The Hickman line I currently have is my 17th line in 12 years. I’m going to need TPN feeds for the rest of my life so I’m always going to need a line. But because of the number of lines I’ve had in my chest, neck, arms and groin my veins are damaged, scarred and in some cases completely unuseable. So if they pull the line out we need to find somewhere to put a new line in and eventually I’m going to run out of places they can put a line. And when that happens, it’s the end of the road for me! So we need to weigh up the risk of keeping this infected line in versus the longer term risk of taking it out. I do have absolute trust in the doctors and nurses on F22 and know that if they thought that keeping the line in was making me too unwell they would take it out and that has always been the plan. 

A bed became available on F22 so I was moved up to what is practically my second home where I was put in my own room and my own bathroom. Most of the rooms on the ward are single rooms but there are a few doubles but because of the RSV being so contagious I couldn’t share and got a single room. But I wasn’t allowed out of the room while I was contagious so it was a bit like being in prison! But for the first week I didn’t really care as I felt so poorly. It was nice to see all the nurses and catch up with them because I’ve not really seen them very much this year (which is obviously a good thing!)

Because the Hickman line is infected it can’t be used so that means no TPN as it can’t go through a cannula. Getting a cannula into my veins is a mission as my veins are so bad but they did manage to get a tiny one into my hand. But on Thursday morning I woke up to find that the cannula had tissued and all the fluids that should have been going into my vein had gone into my hand instead. I only realised when I got up to go to the loo and couldn’t move my fingers! When I text hubby to tell him he immediately asked to see a photo of what he called my clown hand. When I sent him these 2 pictures he thought it was hilarious so I thought I might as well share them here to give you all a laugh. I have to say it was quite tricky taking these photos given the huge sausage fingers I had! 

None of the doctors on the ward could get another cannula into me so they had to call the anesthetist up to have a go. After waiting all day for him to come when he offered to put two in I said yes! I needed IV antibiotics and fluids so figured two was better than one!

But unfortunately both the cannulas only lasted 12 hours before they both tissued and I was left with none again. So the doctors decided it would be best to get a mid line put in. A mid line is a semi permanent line that goes in via a vein on your upper arm and ends around the shoulder. It’s like a picc line except for the fact that you can’t have TPN through it. So why didn’t they put a picc line in so I could have my feeds? Because the tip of a picc line ends at the heart which would be right next to the tip of my infected Hickman line meaning there would be a high risk that the infection would transfer from the Hickman line to the picc line. Especially with all the sugars from the feeds feeding the bacteria. The mid line has to be put in by a doctor in Interventional Radiology and the procedure takes about 45 minutes. The worst bit is when they inject the local anaesthetic but after that you don’t feel anything other than a bit of pulling and pressure. 

The good news is that the line has two lumens (little lines within the line) so it means they can run antibiotics and fluids at the same time. They’ve got me on two different types of very strong antibiotics and I have to have 10 days of treatment following a negative blood culture meaning I’m going to be an inpatient until at least the 19th December. 

I’ve been in hospital for 11 days now and I’m starting to feel better. But in the back of my mind I’m also counting the days until Christmas Day. I’m hopeful I will be out in time to have Christmas at home with my family but it will only take one thing to go wrong to throw a spanner in the works. Luckily I did the vast majority of my Christmas shopping over the Black Friday weekend and there’s always Amazon for any last minute bits. And to be honest as long as the kids have their stuff any adults in the family will have to understand if their gift is late or missing. 

My poor Hubby had his birthday this week and so instead of us going out as a family to celebrate we ended up spending a couple of hours in my hospital room, opening cards and presents and playing games. Luckily Big Girl is still off work after breaking her arm a couple of months ago so she was able to pick up the customary birthday Millie’s Cookie and cards and stuff and Big Fella even managed to order his dad a new Alexa echo dot, mainly so he wouldn’t keep nicking his! 

So that’s where we are so far. The antibiotics are giving me a bit of a dicky tummy, even more so than normal, but I’m feeling so much better than I was when I was admitted. My sleep at night is pretty disturbed with the pumps alarming and the nurses coming in to hang new bags of antibiotics or fluids but I’m enjoying some lovely afternoon naps! I’m trying to use this time to really rest and recuperate so that when I get home I’m well enough to enjoy Christmas but I’m also a bit worried that I will end up spending my first ever Christmas in hospital. I think if we can manage to keep the Hickman line my chances of getting home in time for Christmas are good but if it needs to come out then I might end up being in longer waiting for a replacement to be put in. So fingers crossed the antibiotics keep doing their jobs, the line stays in and I’m home in time to watch The Snowman with Hubby and the kids on Christmas Eve.