Two weeks inside

I have just seen the Doctors this morning who have confirmed that I do have a line infection. To be honest I was really shocked- I had convinced myself that it was just a virus and that I would be out by the weekend. So now I'm having to come to terms with the fact that I'm definitely not going to Germany and will be in hospital for a minimum of 2 weeks. I'm gutted. Absolutely gutted. 

The blood cultures show that there is a bug in the line but nobody can explain why I didn't have any temperatures or fevers. I continued to use the line all last weekend and actually felt better when having my feed which is the exact opposite of all the other times I've had line infections. Because of this the blood cultures are going to be repeated today to make absolutely sure that there is an infection and to identify it so the microbiology people can tell the doctors what antibiotics to treat it with. 

I am also going to look at other ways I can reduce my chances of getting infections so will be trying taurolock again. This is a medication that goes in the line when not feeding and the idea is that it prevents bugs getting in. A few years ago whilst an in patient at St Marks they did try taurolock on me but I had an allergic reaction so I use 70% alcohol to lock the line instead. This dramatically reduced the number of infections I got but it seems to not be working now. If I have an allergic reaction to the taurolock again then at least I'm in the right place to be treated. And if I don't then it's something new to try in my battle against the bugs. I'm also going to learn the Nottingham technique of connecting and disconnecting my TPN. Believe it or not every hospital has their own technique; there is no universal method or general practice. I find it crazy that there is no standard practice but that's the NHS for you! I will do anything to prevent future infections so I'm willing to try anything!

Whilst I was writing this the phone rang and it was Hubby. When I told him that it was a line infection he went very quiet. He was obviously shocked and very upset. I think we both thought (or desperately hoped) it was going to be a virus and that I would manage at least a few days in Germany. Apparently the last thing the kids talked about before going to bed and the first question they asked when they woke up this morning was "When is Mum coming?" Hubby said he would tell the kids later but Big Girl walked in the room and overheard some of the conversation and started asking questions. Hubby passed the phone to her and I told her and then Big Fella that I wouldn't be coming and that I did have a line infection. It was one of the hardest things I've had to do. They both got upset but I tried to remain upbeat and talked about all the fun things they would be doing and that they could FaceTime every night and send me pictures to keep me up to date. All the while I'm biting my lip trying to hold the tears back and the lump in my throat is making it harder and harder to talk normally. One of the medical team needed to talk to me so I had to cut short the phone call but to be honest that was probably a good thing because I couldn't hold the tears in for much longer. I try really hard to not get into the why me thinking but at times like this life does seem very unfair. I see my friends having holidays or days out with their kids and family and I just want to be able to that. I would love to be able to just throw a few things in an overnight bag and go away for the weekend with Hubby or take the kids to Spain or America but it all requires so much planning and effort that sometimes I wonder if it's actually even worth it. 

I do worry about how all this affects the kids. When they're grown up and look back at their childhood will they think that they missed out or had to grow up too quickly. After all they've seen me in hospital hooked up to machines with tubes and wires going in and out of various orifices, they've had to pick me up after I've collapsed and seen me be taken to hospital in an ambulance more times than any child should. Will they be angry that their childhood wasn't 'normal' or will they remember the times when I was seriously ill but still struggled on to attend school plays and parents evenings? I hope they know and that they realise now that they're very loved. Ultimately it's the kids that keep me going. Without them I wouldn't have a reason to get up in the morning and without them I wouldn't still be fighting. I want to see them grow up. I want to see them pass their driving test, to go to university, to get married and have their own children. I know it sounds very melodramatic but I don't know that I will manage that. Line infections aren't just like a bad cold, they can kill you. They can damage your heart and leave you with long term problems. Being on TPN reduces your life expectancy but without it I would die. I've been told that the amount of opiates I'm on has probably knocked 10 years off my life but without them I would be in agony and have zero quality of life. The ketamine infusions I have to try to stay on top of the pain can damage my bladder and long term use could result result in my bladder being removed but what do I do? Worry about something that may or may not ever happen and stop having the infusions or continue with them to have some quality of life and worry about it if or when it happens? These are the sorts of things that play on my mind at 3am. 

Anyway, it looks like I will be having a 2 week stretch inside Queens Medical Centre hospital. I would love to know how time in hospital compares to time in prison... Who gets it easier? Who has the better facilities, food and care? And who pays the most for the TV? You know that the high cost of the TV in hospital is a real bug bear of mine. If I pay daily for the TV it costs £10 a day but if I buy a card for 10 days it's £40 or 14 days it's £55. It's a total rip off but when I'm lying in hospital feeling crap I don't always have the energy or concentration to read books or magazines and just want to stare at a TV screen and watch crap daytime tele. 

So there you go. I've got everything out of my head and into this blog post. I always feel better when I write it down; somehow it makes it easier to make sense of it all when its on paper and not going round and round in my mind sending me crazy! I know it sounds mad but it's easier to blog when I'm unwell because I am forced to slow down or even stop completely. I must try and blog more regularly at home but I get so wrapped up in trying to keep life ticking over that I'm either busy, busy, busy or asleep. There's no middle ground for me and I've got to try to find a way to achieve that. 

NB x