The plan was for me to be discharged either Sunday or Monday and I was so excited to get home especially as Big Fella has his birthday this week. But on Saturday night every time I turned over in bed I ended up waking up with pain in my chest around my Hickman line. I thought maybe I had caught it or pulled it in my sleep and didn’t think too much of it until on Sunday I started to feel pretty poorly.
Early afternoon I had to buzz for the nurse because I was coughing and coughing and couldn’t get my breath. It felt like there was a weight on my chest. The doctor came and ordered a Covid test and an ECG (both of which were thankfully ok). Usually Hubby and the kids come to the hospital on a Sunday to bring me clean pjs and we have an hour in the hospital restaurant together but I told them not to bother coming as I was still hoping to be going home the following day. I also thought that if I had a day resting I would start to feel a bit better but as the day went on I felt worse and worse. My whole body was aching and I felt like I had been hit by a bus. I was freezing cold despite being under multiple blankets and having layers or clothing on but it all got worse when my feed was connected. I spiked a temperature and my whole body became sore to touch; if someone accidentally brushed against me I would almost jump off the bed!
If I had been at home I would have thought ‘that’s a line infection’ straight away and stopped the feed but being in hospital it wasn’t my first thought. Looking back the fact that the nurses were happy for the feed to continue running for almost 2 hours and they didn’t immediately think it could be a possible line infection does worry me. In the end I was the one who insisted that it be stopped because my temperature was rising and rising.
Once they thought it could be a line infection the usual blood cultures were taken. They have to take blood from the Hickman line to see if there are any bugs in the line itself and also blood from each arm to see if it’s travelled around the body. Ordinarily antibiotics would be started straight away but for some reason they held off. It usually takes up to 3-4 days for the blood cultures to grow anything (if there is an infection) but apparently there was growth on mine after 7 hours! So on Monday they decided that they would start me on antibiotics.
I have multiple severe antibiotic allergies so finding the right antibiotic to treat the right infection that I’m not allergic to is often tricky and it wasn’t until very late on Monday night that microbiology told the dr on call which to prescribe. They wanted to give me Vancomycin which I am officially allergic to but in the past have tolerated if it was given over a much longer period of time. I was happy with this as it had been used previously to treat a line infection but this time things didn’t go so well.
Instead of it being given over 30 minutes it ran for 3 hours and almost straight away I started to get some itching around the cannula site. This progressed up my arm but because there wasn’t a rash I wasn’t too worried. I tried my best to ignore it but after 2.5 hours my whole body felt as if it were on fire and I had an intense urge to scratch everywhere. My skin was so hot and sore that the nurses had to put wet, cold towels all over me and get the dr to prescribe me an IV antihistamine. I noticed yesterday that my legs felt really sore and when I took my pj bottoms off I was shocked at what I saw...
The doctor thinks that the bruising is as a result of the scratching but I’ve never experienced anything like this. It’s so sore that it hurts when I’m lying in bed. Safe to say that I won’t be having Vancomycin again!
Yesterday they started me on 2 other antibiotics (no reaction to those luckily!) and they took repeat blood cultures. I’m not sure why and they’ve still not confirmed if it’s definitely a line infection or not. I’m pretty sure it is as I’ve had so many and how I’m feeling is typical of one. If it is confirmed that will be 7-14 days of antibiotics and possibly losing this Hickman line. The thought of having to go through another line insertion fills me with dread as the last one was so traumatic. The line I have now was only put in at the end of March and is my 12th one in 7 years. To put that into context some people can have the same line for 5, 10 years plus and every time a new line is inserted it creates scar tissue in the chest wall and damages the veins making future insertions more and more difficult. My worry is that at some point they won’t be able to put another line into my chest and then I will be looking at a femoral line which is in the groin. I’ve had a temporary femoral line in the past and they’re uncomfortable and annoying and not in the easiest of place to keep clean especially when you’re not always in full control of your bowels!
So until they know one way or another whether it is a line infection the line cannot be used. This means I’m unable to be given my feeds so I’m relying on just fluids through a cannula. Not being able to eat or drink this will mean I won’t get any calories for the period of time my line is out of action- hopefully a bit of weight loss will be the silver lining!
Sadly though because of a potential infection I wasn’t even allowed day leave to go home and celebrate my sons birthday with him. This absolutely destroyed me and I’m just so utterly fed up of being ill. Hubby came with the kids up to the hospital for an hour and brought all his cards and presents so I could watch him open them but it was horrible having to do it in the day room. It’s not the first birthday that the kids have celebrated in a hospital day room and it probably won’t be the last but it just makes me so mad that they have to. Kids should be carefree and birthdays should be one of the best days of their year but my illness even manages to creep in and spoil these days. Yes, I’m grateful that I could see him and that we had an hour together but watching him leave the hospital on his birthday knowing he would be at home without me was him was heartbreaking.
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