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What needs to happen to get me home


Now my bowels are moving, albeit sluggishly and begrudgingly, the focus has shifted onto what needs to happen to get me home. I need a new Hickman line inserting, my Picc line taking out and I need to move off IV medication onto oral. And of course I need my bowels to keep moving!

I’m on countdown to my holiday in Cornwall and the reason this holiday is so important is that while we are away it’s Big Girls birthday. In the past I’ve been in hospital and not well enough to be discharged when our summer holiday has rolled round and Hubby and the kids have gone without me. It’s horrible but the way I look at is that there’s no point in the whole family missing out just because I’m in hospital yet again. But I cannot miss this holiday because if I do it means I miss her birthday and I think that would break me and Big Girl. 

So on Mondays ward round these were the discussions I was having with Dr B. One of the other things that needs to be sorted out is the hospital needs to get in touch with Calea, the company that deliver my feeds, and arrange a delivery to my house. When you’re an inpatient the deliveries get put on hold and while on hold they cannot process my holiday request. I have to give the company notice of when I’m going away and where I’m going so they can arrange for my feeds to be delivered to the holiday home instead of my house. They normally need a couple of months notice (and I did get in touch with them a while back) but because of my feeds being on hold the holiday request is also put on hold. I need to make sure that I can get my feeds delivered to Cornwall as we won’t have room in the car to take them ourselves. 

On Monday Dr B said he would get in touch with microbiology to check the blood cultures that were taken over the weekend hadn’t grown any bugs and that they were happy for a new Hickman line to be inserted. From past experience it can sometimes take a week to ten days to get a slot in Interventional Radiology (IR) after microbiology give the nod so I was starting to panic that the days could tick by and it could all be a bit tight to get discharged in time.  So imagine my surprise when on Tuesday morning they told me I was getting a new line that day!! The last Hickman line I had put in was inserted without sedation and it was very traumatic so I told the team on Tuesdays ward round that I would need sedation and if they couldn’t sedate me I wouldn’t let them put the line in. Yes, I’m desperate to get home but I’m not willing to put myself through that again. In order to have sedation I would need a cannula because I didn’t want them accessing my Picc line incase they didn’t do it using the sterile technique in IR as it would be Sod’s law that I would end getting an infection! So we had to go through the palava of trying to cannulate me which we all know is a nightmare because of my shitty veins! Luckily after a few attempts we got one in and before I knew it the porter was there to take me down to IR.  

It’s become a running joke with the staff in Interventional Radiology that I’m collecting loyalty points because I’m there so often and I’m on first name terms with everyone in the department! Most patients get a line and it lasts for years but this is my 13th line in 7 years (not including the 3 Picc lines, multiple jugular lines and the one time I had a femoral line) so you can imagine that they probably see me more regularly than any other patient! This time I wouldn’t let them start until the sedation was in. It’s called conscious sedation because it doesn’t knock you out, but it does makes the experience much more bearable. When the Radiology consultant told me the line was in and he just needed to stitch it in place I couldn’t believe it. It was one of the best and quickest insertions I’ve had and this photo I sent to Hubby shows just how happy I was to have my new line. 


I had changed most of my medications to oral tablets on Monday but I was still having sub-cut morphine injections. We decided that I would continue to have these on Tuesday and Wednesday because I would be sore after having a new line put in. I was supposed to move onto sevradol tablets yesterday but I woke up feeling sick and in a lot of pain so I was still having the morphine injections but I’m moving onto tablets today. If my pain is well controlled on oral meds then we can start thinking about home. My Picc line was taken out on Wednesday after we had used the new Hickman line for my feed on Tuesday night and had no problems and there’s a feed delivery been scheduled for next week. Although I’ve been close to being discharged 3 times over the last few months this time feels like it could actually happen. But until I’m sat in the car driving away from the hospital I won’t believe it so I’m not holding my breath as past experience tells me that things can and do go wrong. But I have everything crossed that I get home to my family sooner rather than later 🤞🏻




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