Skip to main content

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 🤞🏻




Comments

Popular posts from this blog

Light at the end of tunnel

I’m sat writing this blog post in St Marks, the specialist bowel hospital in London. So much has happened in the last few weeks; it’s all been a bit of a whirlwind. But I finally feel like there is some hope at the end of the tunnel. Let me tell you why.  At the beginning of June I was admitted yet again to QMC in Nottingham with huge amounts of pain, my bowels not working properly and just feeling generally unwell. I had only been home a couple of weeks since the admission in May but I had been feeling so rubbish most of my time had been spent in bed. I had tried everything I could to stay at home but the pain had become so bad I was barely able to stand or take a few steps on my own.  I had expected to maybe be in for a week or two to get stronger pain meds and get back on my feet but I ended up being in for almost a month. They put me on morphine injections and ketamine but then stopped them when my heart rate dropped to 30 beats per minute and my breathing to 7 breaths a minute. Th

The light at the end of the tunnel is a train

Last week was a busy and pretty crappy week for me health wise. I had to go and have blood tests done with the nutrition nurses and I had two hospital appointments; one with the gallbladder surgeon in Nottingham and the other with colorectal surgeon at St Marks. I was hoping to have at least one surgery date to write in the diary following these appointments but I came home empty handed on both occasions. Here’s what happened.  I began noticing over the last few weeks that I’ve started feeling really crappy. I’m feel lucky to have been at home for the last 6 months and I have been the most well I have been for years but it felt like things had shifted slightly recently but I couldn’t quite put my finger on it. But years of being sick means I know my body and I can tell when something isn’t right. I have been feeling permanently exhausted and having way more bad days than good. I’ve gone back to spending 2, 3 or more consecutive days in bed, unable to do anything but watch tv and sleep.

The wrong size line

I’m on the M1 heading back to Nottingham after a road trip to St Marks to get my line repaired. But this is me, and as usual it wasn’t a smooth ride. More like a bloody shit show. So what happened? Let me tell you… After being admitted to QMC in Nottingham on Sunday with a broken Hickman line I was taken down to Interventional Radiology on Monday afternoon to get my line repaired. Firstly, I couldn’t believe it was happening so quickly and secondly I didn’t want to get too excited because, well it’s me, and usually things don’t go according to plan. And sadly I right to rein in the excitement.  When the doctor came to consent me for the procedure it was for a replacement, not a repair. I assumed he had made a mistake so I told him I was there to get my line repaired and was definitely not there for a new one. He looked at me and said “I hate to be the bearer of bad news…” and that’s a sentence that never bodes well. He then went on to say that they didn’t have any repair kits and that