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

Curvy Goes Live!

We’ll launch day is here!  I feel good and excited that I can now share my new blog with you all.  I really hope you like it.

If you are wondering why I’m having another operation, keep a close eye on my blog because I’ll be updating soon.

It’s been a tough few months with pain but hopefully things will be better after August. That’s why I’m ok with having another surgery. I’m a bit fed up because it’s in the school holidays again but mum says I’ll probably have some time off school this time – yes!!!

Thanks for reading!
Emilia x

It’s all About the Cushion

Hi everybody and welcome to another video blog.  This time I am reviewing some of the cushions I use including my favourite ever one!  Have a look at the video for my video version.

Since my last operation I have developed some swollen lumps over my screws and also a lump where the bottom of the rod is. My doctor says this is my body’s way of protecting my skin and is because I am young and don’t have much fat there to form padding.

Because of this I find it really sore if anything is touching that area and have had to use cushions to make it more comfortable to sit in chairs and lie down in bed.

ive tried lots of different ones but decided to review just three.

1) Askle bean filled donut cushion – £79.99

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2) Matalan Micro Bean Travel Cushion – £8

matalan cushion

3) Firm Memory Foam Donut Cushion – £13

Foam-Ring-Cushion

Operation MAGEC Rod 2015


 

MAGEC RODS

When I was six I had to have a MAGEC Rod put in my back which would straighten it a quite a lot.  A MAGEC rod is a metal growth rod with a magnetic moving part that means the rod could be lengthen as I grow, but without me having to have more operations.

I had to be admitted to the hospital the day before my operation and this  it was quite scary waiting for it. I was admitted and because I hadn’t had my operation yet I settled down on the first day and had lots of fun like going to the park next to the hospital.

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I was allowed to have a midnight feast and the nurses woke me up to let me do this.  This was because I wasn’t going to be able to have anything to eat for a very long time.  I was given some numbing cream on my hands and waited to be taken to the operating theatre.

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A doctor called an anaesthetist gave me some medicine which put me to sleep for about 5-6 hours (i think) and that’s when they did my operation. The doctors attached the rod to my screws and some new screws at the top of my back to fix it down better.  There wasn’t enough room for me to have two rods put in as was still quite small (this is what normally happens but one rod was better than none!).

After my Operation

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When I woke up I felt so, so, so, so sleepy and i remember having a button that I could press to help me get medicine to take the pain away.  I was in a place called HDU and had a lovely nurse called Laura looking after me.  They gave me a lovely velvet rabbit to cheer me up and did lot’s of checks on me every hour to make sure that all my nerves were working properly.  I slept a lot and remember feeling very, very hungry!

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I moved to the ward the next day and started to feel a little bit better so the nurses let me have some toast.  I was so so hungry I had more toast and a yogurt too!  Over the next few days I had lots of guests come to visit me and I loved it because they gave me presents.

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Every day that i was in hospital I tried to move around a little bit more, like standing up or sitting out in a chair.  I found that this was hard at first but did get easier as I started to get better. 20150712_060554.jpg

On the fifth day I was in hospital I saw a lady who was a physiotherapist and she helped me to walk down the ward and up and down some stairs.  Because I was able to move around so well she said that if the doctors agreed I could go home.  So I did!  It was actually my birthday that day and so I think everyone really wanted to help me get home as quickly as possible!

I was in a lot of pain on the way home, I had to lie down on my nanny’s knee because I was not comfy.  I found that I needed lots of rest and could only do busy things for a short time before my back started to hurt. When I got home I had to sit on the nicest bean bag in the house and played with my new lego.

It took a few ore days but I was able to get back to normal quite quickly, everyone was really surprised but I don’t think it was all that bad really!

So that is the story of my MAGEC Rod, thanks for reading and please come back again!

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Before MAGEC rod operation

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After MAGEC rod operation

 

Emilia x

 

If in Doubt, Massage it Out

 

​​​​​One of the ways I manage my back ache, which usually become worse before bedtime is by having a massage on all the muscles that feel tense and sore.

My mum will do these whenever I need them and we have used lots of different oils and lotions to help it feel nice. I’ve decided to review them and I have selected my top 3. Have a look at my video to find out more.

Emu Muscle and Joint Relief – £24.99

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What they Say:

“100% natural Australian Emu oil blended with coconut oil and a combination of essential oils known for their healing abilities for additional pain relief. It can assist with the of symptoms of arthritis, back pain, sciatica, fibromyalgia, polymyalgia, gout, frozen shoulder, sports injuries other and other aches and pains.”

I think this smells a bit strong and quite a funny smell but it makes the massage feel lovely and really helps my tense muscles to relax.

Lush Strawberry Feels Forever Massage Bar – £5.95

lush massage bar

What they Say:

“A creamy strawberry massage bar with a fruit sundae fragrance. If you’re feeling fruity, this massage bar is just the thing to get you in the mood. We’ve crushed fresh strawberries and infused hibiscus flowers for a fabulous fragrance, while lashings of butters and oils to make your skin velvety smooth. Fair Trade organic cocoa butter, Fair Trade shea butter, and extra virgin olive oil are in here for hydration, as only the best will do.”

I love the smell of this so much, it’s just like real strawberries!  This melts down and feels really nice when massaged onto my back.  It has lasted a really long time and the only thing I can think of is that it sometimes leaves a pink mark on my cloths, but it does come out after it’s been washed.

Bio-oil – £8.99

bio oil

What they say:

“Bio-Oil has been clinically proven to help improve the appearance of scars, stretch marks, uneven skin tone, ageing and dehydrated skin.

The Bio-Oil formulation combines some of the most beneficial skincare ingredients, including vitamin A and E with Calendula, Lavender, Rosemary and Chamomile oils, plus unique to Bio-Oil, PurCellin Oil, which helps to ensure they are easily-absorbed deep into the skin where they can provide targeted treatment. “

I love the smell of Bio-oil, it’s a bit flowery.  It’s very nice as a massage oil and soaks in well.  It is also known to be very good for scars so I have it rubbed into my scars on my back to help them heal.  It seems to have worked well as my scars are now very pale and you can hardly see them.

So that’s my top three massage oils.  I have used lot’s of other ones and sometimes just grab the nearest body lotion but if you wanted something that I think is really good, try one of these.

Thanks for reading or watching and Hope you enjoy!

Emilia x