Today I went to St Marks for my pre op assessment. On the way down there this morning I had an emotional wobble and started crying as I was driving down the A1. I had this overwhelming urge to turn the car around and not go. I think it just hit me at that moment that I was driving to hospital for pre op tests. And pro-op tests means that there's an operation coming. And I'm frightened.
I'm frightened that I will go in and wake up still with a stoma because there is some problem with the 'fanny assessment' and I'm going to need referring to a gynaecologist. I'm worried that I will wake up with no stoma and I have no idea what life will be like without one. I've had it for nearly 5 years now and adjusted and the thought of having to readjust my life again, create a 'new normal', well that is pretty scary. I'm frightened that I be stuck there for weeks and weeks like I was over the summer. I'm frightened about leaving my kids and the impact it will have on them. I'm just bloody frightened about it all.
But I didn't stop the car. I kept driving because I know that this is something that I must do. I have to finish this. And I have to be brave. No wimping out now. And anyway, the last op was the real biggie. This one is pretty much like having a mini-break. Only without a spa.
I'm frightened that I will go in and wake up still with a stoma because there is some problem with the 'fanny assessment' and I'm going to need referring to a gynaecologist. I'm worried that I will wake up with no stoma and I have no idea what life will be like without one. I've had it for nearly 5 years now and adjusted and the thought of having to readjust my life again, create a 'new normal', well that is pretty scary. I'm frightened that I be stuck there for weeks and weeks like I was over the summer. I'm frightened about leaving my kids and the impact it will have on them. I'm just bloody frightened about it all.
But I didn't stop the car. I kept driving because I know that this is something that I must do. I have to finish this. And I have to be brave. No wimping out now. And anyway, the last op was the real biggie. This one is pretty much like having a mini-break. Only without a spa.
The pre op assessment actually sounds much grander than it actually is. It basically involves them taking your blood pressure, weighing you, taking your blood and urine for tests, MRSA swabs and having to answer a million questions about your medical history.
The winner of the most random question though has to be the 'how many pillows do you sleep with?' I wonder if they ask this so that they can make my bed perfectly, to my exact requirements or just to make sure you don't need 10 pillows to be comfy at night because you might then go round stealing them from the other patients? Who knows.
All of this took about 30 minutes and not the hour and a half I was told over the telephone. But the good thing about St Marks is that they have a special clinic where it all happens in one place which means no trekking through the hospital to have blood tests etc somewhere else.
After this was finished I went up to the Intestinal Failure Unit on level 9 where one of the specialist nurses was going to remove the stitches from my Hickman line. Whilst I'm waiting the friend who is looking after the kids texts me to ask me to call Big Fella as he's a bit upset. When I talk to him on the phone he's crying and saying that he misses me. He wants to know when I'm coming home, if I'm sleeping at the hospital tonight, if the nurses think I'm poorly again. I reassure him that everything is fine, that the nurse will be taking my stitches out and then I will be coming straight home. No sleeping at the hospital, at least for today.
This whole thing has hit the kids very hard as I've spent so much time away from them. They get separation anxiety and I wonder if the fact that we have had a really lovely 2 weeks at home altogether as a family will make it worse when I go in on Thursday. It's really hard as a Mum to know that you are causing your kids and family so much heartache and worry but that there is nothing you can do about it. I only hope it teaches them to be resilient and compassionate rather than screwing them up and leaving me with a massive therapy bill in the future!
After being half an hour late, the nurse comes to take my stitches out. Hickman lines are very clever bits of kit, which is why they cost nearly £500. They have a special cuff that sits under the skin that the skin grows attached to and that stops it from being pulled out or accidentally just sliding out. It takes about 3 weeks for the skin to attach to the cuff so that is why you need stitches in place for the first three weeks to hold it in place.
But because of the infection just before Christmas the nurse said that it may not have attached to the cuff enough and she might not be able to take the stitches out. She also wasn't sure if the infection had completely cleared up as I am still experiencing pain in the line and in my right arm so she took another set of blood cultures. That way if there is still an infection when I go in on Thursday they can start me on antibiotics straight away.
( I would just like to say that at this point as I'm writing this post my pump has started alarming telling me there is air in my line. Having air in your line is potentially fatal, although I'm pretty sure that whatever air bubble the pump has detected won't kill me tonight. Fingers crossed. I've flushed my Hickman line and run some of the TPN through my pump but when I connect myself back up it starts alarming again. I decide to phone the on call nurse and whilst I'm on the phone I look down and notice that my stoma bag has started leaking. For crying out loud- give me a break! So now I have a pump alarm going off, poo going everywhere and to top it all off Big Girl is having a meltdown because I have changed one of the photos in her photo frame in her bedroom. This actually is my life. Fancy swapping? And the on call nurse doesn't know how to operate the particular model of pump that I have I am now waiting for another nurse to call me back so I may as well finish my post)
Back to St Marks and the stitch dilemma. In the end the nurse is happy that she can safely remove the stitches and that's what she does. Here's the before and after pictures:
Having stitches removed doesn't really hurt, unless they nick you with the stitch cutter. The thought of having them removed is much worse that it actually happening. Like a lot of things in life I guess.
When I pick the kids up I give them massive cuddles. I think they needed it and so did I. I realise I don't want to take them to school tomorrow. I want them to stay at home, cocooned in our little bubble where everything is OK and we play games and watch TV together. I don't want things to go back to normal because for this family normal means hospitals and Mummy not being there. So if you don't see me in the playground tomorrow it's because we are snuggled up on the sofa with the curtains closed watching The Snowman pretending that the holidays haven't finished.
NB x
(P.S. Another on call nurse has just called and talked me through how to fix my air bubbles, so it's all good)
After this was finished I went up to the Intestinal Failure Unit on level 9 where one of the specialist nurses was going to remove the stitches from my Hickman line. Whilst I'm waiting the friend who is looking after the kids texts me to ask me to call Big Fella as he's a bit upset. When I talk to him on the phone he's crying and saying that he misses me. He wants to know when I'm coming home, if I'm sleeping at the hospital tonight, if the nurses think I'm poorly again. I reassure him that everything is fine, that the nurse will be taking my stitches out and then I will be coming straight home. No sleeping at the hospital, at least for today.
This whole thing has hit the kids very hard as I've spent so much time away from them. They get separation anxiety and I wonder if the fact that we have had a really lovely 2 weeks at home altogether as a family will make it worse when I go in on Thursday. It's really hard as a Mum to know that you are causing your kids and family so much heartache and worry but that there is nothing you can do about it. I only hope it teaches them to be resilient and compassionate rather than screwing them up and leaving me with a massive therapy bill in the future!
After being half an hour late, the nurse comes to take my stitches out. Hickman lines are very clever bits of kit, which is why they cost nearly £500. They have a special cuff that sits under the skin that the skin grows attached to and that stops it from being pulled out or accidentally just sliding out. It takes about 3 weeks for the skin to attach to the cuff so that is why you need stitches in place for the first three weeks to hold it in place.
But because of the infection just before Christmas the nurse said that it may not have attached to the cuff enough and she might not be able to take the stitches out. She also wasn't sure if the infection had completely cleared up as I am still experiencing pain in the line and in my right arm so she took another set of blood cultures. That way if there is still an infection when I go in on Thursday they can start me on antibiotics straight away.
( I would just like to say that at this point as I'm writing this post my pump has started alarming telling me there is air in my line. Having air in your line is potentially fatal, although I'm pretty sure that whatever air bubble the pump has detected won't kill me tonight. Fingers crossed. I've flushed my Hickman line and run some of the TPN through my pump but when I connect myself back up it starts alarming again. I decide to phone the on call nurse and whilst I'm on the phone I look down and notice that my stoma bag has started leaking. For crying out loud- give me a break! So now I have a pump alarm going off, poo going everywhere and to top it all off Big Girl is having a meltdown because I have changed one of the photos in her photo frame in her bedroom. This actually is my life. Fancy swapping? And the on call nurse doesn't know how to operate the particular model of pump that I have I am now waiting for another nurse to call me back so I may as well finish my post)
Back to St Marks and the stitch dilemma. In the end the nurse is happy that she can safely remove the stitches and that's what she does. Here's the before and after pictures:
Having stitches removed doesn't really hurt, unless they nick you with the stitch cutter. The thought of having them removed is much worse that it actually happening. Like a lot of things in life I guess.
When I pick the kids up I give them massive cuddles. I think they needed it and so did I. I realise I don't want to take them to school tomorrow. I want them to stay at home, cocooned in our little bubble where everything is OK and we play games and watch TV together. I don't want things to go back to normal because for this family normal means hospitals and Mummy not being there. So if you don't see me in the playground tomorrow it's because we are snuggled up on the sofa with the curtains closed watching The Snowman pretending that the holidays haven't finished.
NB x
(P.S. Another on call nurse has just called and talked me through how to fix my air bubbles, so it's all good)
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