Recovery? Easy Peasy!

I had my operation over four weeks ago now and I’m really starting to feel so much better.  I think the first two weeks were the most painful and I did have to have lots of medicines to help me.  While I was recovering I spent a lot of time lying down and watching movies – I had a summer movie marathon!

I only have to take my medicines when I need them now or at night times to help me be comfortable at bed time. I think the worst thing has been not being able to do too much in my school holidays.  I have drove my mum and dad a bit crazy because I have been quite bored sometimes (Take a look at my Vlog for curing boredom), but I don’t mind being lazy really!

My family think that I look much straighter, and maybe a bit taller too.  I feel like I can sit much straighter and I don’t have any bumps at the bottom of my back anymore because my broken rod has been fixed so that is much better because I don’t knock them and I can finally lean back on chairs or lie down on my back without it hurting too much.  My scars have healed well and aren’t sore anymore, just really itchy!

I have had lots of cards and gifts from family and friends so I would like to say a big thank you to everyone, it was really nice to have treats and it did cheer me up lots.  Thank you to everyone that visited me while I was in hospital or at home, I really enjoyed your visits.

My friend Maja came to visit me at hospital

My Nannie!

My friend Lola came to see me when I got home from Hospital

Two weeks ago I went back to the hospital because it was the MAGEC rod lengthening clinic and my doctor said if I felt up to it I could have my rods lengthened, so I went back and had them lengthened.  I want to film it properly so you can all see what happens when I have this done, so I will do – but you will ave to wait until December!

Back at the clinic at Sheffield Children’s Hospital

Having my x-ray done

My x-rays show that the rods look good and they are now a few millimetres longer than three weeks ago, which means that I am taller!

I went back to school this week, it was great back to normal and seen my best friend at school. It’s hasn’t been too bad and I’ve only had to have pain killers a few times.

Watch out for my post coming soon about my ideas for things to do in hospital.

Thanks for reading!

Emilia x

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There’s No Place Like Home

Wednesday 17th August

Yesterday was definitely a long, long day for me. In the morning the pain nurses came to see me and said that it would be best to try and stop using my PCA button and move on the medicine instead. So that’s what I did.

I managed to get out of bed and have a shower which didn’t feel too bad at first!

But by the end my back had really begun to ache and so I felt like I really needed to lie down. The nurse removed the pressure dressing and put some clean dry dressings over my wounds.

Just having a shower really wore me out and I quickly needed to have some rest.

When I woke up I had a little visit from one of my best friends from school which was nice and we sat on my bed and watched movies on the hospital tv.

I also sat out and managed to do some of my activity books. This was good because the physio ladies had said that if I managed to sit out in a chair for an hour then they were happy for me to go home.

It took all day for my medicines to properly work and for me to manage sitting out for long enough but I did eventually manage it. I also had to go and have an X-ray to check that the rods looked ok before I went home too. I went down to X-ray in a wheelchair because it was quite a long walk, I had two X-rays – one from the front and one from the side. Everything looked ok, but we will get to find out how everything is doing again in 8 weeks time when I have to go back and see my dr.

Because I managed to do these two things the nurses said that I could go home and they gave us the medicines to take home with me.

I finally got home last night at about 8 O’clock. I was very tired and in quite a lot of pain because of the journey but felt amazing to be back!

Emilia x

Operation MAGEC Rods 2017

MONDAY 14th AUGUST

Well Monday 14th August was a very big day for me! I came into hospital to have my broken MAGEC rod replaced and a second rod put into the left side of my back.

I woke up really early and drove to the hospital with my mum and dad, I hadn’t eaten anything since the night before and wasn’t allowed any breakfast or even a drink before I got to the hospital.

I was admitted to the Theatre Admissions unit at 7:30am where they checked my height and weight, my temperature, heart rate and blood pressure. I had chance to see the Drs and the anaesthetist before my operation. They also allowed me to drink water, while ch was great because I was really thirsty.

The nurses gave me some cream on my hands – magic cream- to make the skin numb for when they had to give me a needle.

This was to stop it from hurting and I think it really does work, Magic! Then I was given a Theatre gown to wear so I got changed right away. When it was getting close for me to go down to the Theatre, the nurses gave me some medicine to relax me and help make me feel less nervous. It was funny because it made me feel quite giggly – not sleepy!

When I got down into Theatre the nurses gave me a Where’s Wally book to look at while they got my medicines ready, which helped take my mind off what they were doing. They put a needle in my hand and then an oxygen mask on my face. Then they told me that the next thing they gave me would send me to sleep. It worked very quickly because I don’t really remember much else until I was woken up in recovery after my operation.

When I woke up I was given a button to press. This is called a PCA – patient controlled analgesia. It allows me to give myself the pain medicine as I needed it. Which to begin with has been all the time. It really helps me feel more comfortable.

I went straight to the ward after recovery and that is where I still am now. It’s not too busy right now so that’s good.

My doctor came to see mum and dad to let them know that the operation had gone well. I now have two new MAGEC rods and they should continue to work when we start to lengthen them in a few months time.

I have been having hourly checks since my operation to check that I don’t have any nerve damage. The nurses come and test how well my arms, hands, legs and feet work. This also means that they wake me up – every hour, all night long!!!

TUESDAY 15th AUGUST

Well I felt very tired yesterday, but the ward got quite busy and noisy so I didn’t sleep much.

I did get to have some food though which was lovely because My tummy was really rumbling by then!

My PCA really helped me to move about and in fact I managed to quite a lot of activity.

The physiotherapist ladies came to see
me in the morning to help me get out of bed. They helped me to sit on the edge, but I felt like I wanted to stand up. They were amazed and asked me if I wanted to try and walk. I couldn’t wait to try that because I was so bored just sitting in bed!

I had a little walk, just a few meters away and then back to my bed. It didn’t feel too bad, I was a bit achy and my back felt sort of heavy. I then sat out in my chair for ten minutes, it was so nice not to be lying down.

I carried on moving from chair to bed as I needed to be comfy and using my PCA. Then in the afternoon the physio ladies came back to try a bit more moving. I had a little walk off the ward and down some stairs. I felt ok, my back felt heavy and ached a bit afterwards, but it felt good to get moving.

I think that I’m moving around quicker this time than after my last operation. I have been using my PCA quite a lot though!

The worst thing about being in hospital is being so bored, I really am already fed up of sitting still all the time. I have lots of things to do like games, colouring and dvd’s but it’s hard to anything for very long before I need to lie down.

I have a really BIG dressing on my back, the nurses have called it a pressure dressing. It feels very strange and sort of heavy but will come off soon hopefully.

Operation Update!

Welcome back! I’m currently on my holiday, but thought I’d take the time to squeeze in this update.  I know that there are some of you still wondering why I am having a operation but first of all I thought I’d give you some back ground information.

If you have read “Operation MAGEC Rod” post then you will know that I have one growth rod in my back and I go to have this lengthened every three months . At my last appointment in June I told my Dr that I had been having a lot more pain and that the lumps at the bottom of my back seemed to be getting bigger. It was these lumps that have been giving me so much trouble because they are really sensitive and hurt to lean back on or lie on in bed!

Because of this he did a close up X-ray so that he could see the screws and rod better than the normal X-ray. It was after this that we discovered the metal rod in my back has broken, in quite an unexpected way. It is very unusual for the metal to break and more common for the magnetic moving bit to break. Because of this I have had to have another CT scan so that they can have an even better look at what has happened.

I have to go back again at the beginning of August but we do now know that the broken rod cannot be fixed and needs to be replaced, then also My Dr will try and put in a second rod on my left side.  MAGEC rods are normally put in in twos but this couldn’t be done last time because I was just too small.

So now I have to wait for the operation, but if it helps and makes things feel better again then I don’t mind. My back has been very painful for a while now and Inahve to have lots of regular pain killers to help me. Even here on holiday, in fact I had to have a letter from my doctor to take my medicines through the airport there’s so much of it!!

Whats happened is a complete change of plan as I wasn’t meant to have another operation to take this rod out for another two years. But I am beginning to learn that nothing is straight forward with scoliosis (straight – ha ha!).

Below is a quick video version of this update plus a few shout outs and some photos of my X-rays and my back. Only look at those though if you’re not too squeamish! It does look quite painful, which it is but not as bad as it looks!

Thanks for reading – I’ll post again soon,

Emilia x

My MAGEC Rod when it went in 2015

My MAGEC Rod June 2017

From the back

The rod protruding – from the side