The Experience Of A Lifetime - A Story By Laura Merry

20 July 2005

Laura Merry, who has Ullrich congenital muscular dystrophy, was 11 when she had spinal surgery in August 2000. Here she tells her story.

OPERATION!

I knew I was having the operation but I thought it was going to be in August 2000. So it was quite a shock when a letter came in saying that I'd moved up the list and that I was to have the operation on the 9th of November 1999! That was only two weeks away, also we had to go and see them on the Monday so that I could see the whole team who would be doing the operation. And that was only three days away because we got the letter on the Friday. Oh boy was I surprised to have an operation only two weeks away! That gave me some thinking to do but I figured out that the best way was to have the operation early so that I didn't have to wear braces when I'm in secondary school, and it would be off by May. Also it would be hot during the Summer seeing that I didn't wear my Jacket much of this last summer. You see when they found the scoliosis it wa a bit too late so I've been wearing a Brace or Jacket whichever you want to call it for three years. Also I have a muscle problem called Muscular Dystrophy which doesn't stop me from doing anything, but my muscles just grow slowly. The only things I cannot do are jumping, getting up from the floor by myself and running very fast, the rest I can do myself.

ME!

Name: Laura Merry Age:11

Description: Short black hair, brown eyes and brown skin

I have a twin sister called Judith who has the same problem as me and she has progressive scoliosis and when she is thirteen she will have an operation just like me. And guess what, there's only a minute between us but its normal because it was a caesarian. We both came from Thailand and were adopted at the age of thirteen months. Our mum is called Terry and she is from County Kildare, Ireland. Our dad is called Bob and he is from Hampshire, England. And I have one cat called Muffin who is now one year old. And Judith has "Willow" the hampster.

MONDAY!

Monday 18th October came around quite quickly and before I knew it, me and mum were passing Hemel Hemptead and had arrived in Stanmore. When we arrived at the Royal National Orthopaedic Hospital (RNOH) the first person we saw was the surgeon Mr. Lehovsky; Dr Thompson; registrar (from Aylesbury). Then next we saw the occupational therapists Eleanor and Sheila. They explained about things I shouldn't do and things I could do. After that is was Mary Chaussaud, she was a specialist pediatric nurse. She showed me that what the scars would look like and prepared me about the operation. Last of all was Dr Geraldine Edge (anaesthetist) who was going to put me to sleep!( Don't worry I don't mean she's going to kill me. she is going to do is just knock me out that's all Uhme!) She was really nice about the operation and explained the things that could happened things that weren't likely to happen. By that it was quite late so when I got home I went straight to bed.

(The week after, I went with my sister and mum down to the Royal Brompton to have a lung assessment and then got back home the next day.) I also had a heart scan to make sure my heart was strong, which of course it was!

ARRIVAL!

Monday 8th November came around really fast and the big operation was going to happen the next day. But I'll tell you later about the change of plans. Me and mum arrived at 10:15 in Sir William Coxen ward and we didn't have long to wait to get to a bed sorted out. And by the end of the day I had moved down to the corner because people left as we came in and we were given the choice to move beds! a lady came in to take some blood from me and it wasn't that bad seeing that I was numb on my hands! They did the usual routine - find out your weight and height and oh lets see how hot you are! We saw the registrar and he explained that I will have a spinal fusion and my mum had to sign a form to consent that I can have the operation. I settled down quite quickly and met some friends. Andrew was a seven year old boy who had fallen down from the ninth floor and broken his legs and feet. the other friend was called Charise who had a tumour and then after the operation she got scoliosis. I had dinner and lunch, dad came at 6:15 and together we went down to the Alan Bray ICU (Intensive Care Unit). That was where I wa going after the operation. Earlier on we found out because of some reason the operation was going to take place on the Wednesday.

SCHOOL!

Tuesday 9th November

All day I was at school. The teachers' names are Julie and Mrs. D'arcy. Geraldine came around and told us about some of the risks that might happen or infections I might catch.

THE BIG DAY!

Wednesday 10th November
This was the big day of the operation and I wasn't nervous at all. But I think my mum and dad were but I knew everything would be ok because lots of people were praying for me including myself. I was woken up at 7:00am and given some pre-med. Also I was given some magic cream on the back of my hands and inside of my arms. While I waited for the men to come and take the bed, I played shoove a penny with mum, dad and my friends. Eventually the men came and I got in my gown, Tasha was the nurse who was dropping me off! Had to put a sticker on my nippy(bi-pap) as I had to have it in ICU. The porters had to wheel the bed through the open air so it was a bit chilly! We had to go in to a special zone for the theatre and you go straight into the anaesthetist room. there we met a lady called Mary who was Geraldine's assistant and Geraldine herself. They tried the needle in my veins twice bu that didn't work so they did the gas which was nice cos it smelt of cherry! All this time my mum and dad were there and later I asked them how quick did I knock out and mum said I just went ZONK!

TUBES TUBES!

When I woke up my mum and dad were there and two men called Rick and Malcolm were looking after me. But what I did notice was a tube down my mouth that was attached to the ventilator. I kept asking when it would come out because it was agitating me. The other things that were in me were nasal gastric tube, TPN,tube for medicine and tube for taking the blood. And I already had a cocktail of painkillers in my back called an epidural! But then things went a bit bananas and I blacked out for a while because my lung collapsed, heart racing and blood level high. So they had to gas me again and put in a chest drain and more painkillers in my back. I wrote a note to mum asking her when will the tube come out of my mouth. The doctors said probably the next day. That night a nurse called Vera looked after me and she was Irish. She was very nice and looked after me well. I kept asking to be turned over cos sometimes I wasn't comfortable. But other than  that I had a good night.

MISS CHATTERBOX BACK AGAIN!

Thursday 11 November

I was awake quite early since loads of things happen in the ICU and my mum came in at 6:00 am. I wrote quite a few times "when will the ventilator tube, that was down in my throat come out?" And eventually Malcolm came and took it out at 8:00am and I was put onto my nippy. When I have my own nippy on I can talk so needn't write, but just give orders out by shouting!

Also  they started me on tpn which is a mixture of protein and vitamins. I was allowed to eat normal food as well besides the tpn so I had some cold lovely ice cream and a middle of a pizza for some reason!During this time mum and dad were taking in turns to look after me by reading to me. We were reading a book called "Thorn Ogres of Hagwood" given by my foster parents. It was about these creatures called wergels who could turn into any creature they wanted to. And one wergel called Gammy (his real name is Gamiel but its's too hard to say so we shortened it) And he is very clumsy and shy. He and his friends have a very strange adventure and that's all I'm going to tell you so you'll just have to read it won't you!

WINNER!

Friday 12th November

Today I had my chest drain removed by Malcolm and I played with dad with our cards - rummy but without money which was a shame because I won, I won 35 points while dad only got 28 points! Na na nanana! I always win. I had two blocks of ice cream which were particularly refreshing. Then next came drama! What happened was I got knocked out or blocked out as you'd probably call it. I got something stuck in my throat so that cut off my air but I also had trouble breathing which also was the problem for a black out. I was revived with oxygen and Malcolm was called to put in a nasal tube to suck out the secretions. During that time I was delirious which is drunk in other words. I felt really strange because everything went black and I could see nothing, and then I found myself talking out of the mist of nowhere saying things like "I think I'm going to die but I'm not!" And "Sorry!" And " where's Judith?" I said thank you to the nurse and Malcolm for helping me and the nurse just said that I shouldn't say thank you which I didn't understand. Oh and about the things I said when I blacked out don't tease me I said them for no reason so you needn't rub it in!

I had physio and I coughed up a lot of yucky stuff and the physios Camille & Sophia were going "Oh well done!" and "that was a good one!" I mean gross! I played cards with dad and it was whilst and I won yet again 26 and dad 23! Ha I got dad again.

After that day I had my electronic bed brought in and my sister came in to stay over and play with me. The two weeks were ups and downs, during that time I was getting physio, my wheelchair and brace all sorted out and when Monday 22nd November came around I left ICU. I was in the wheelchair and the bed was loaded with my stuff. When I was at Coxen I just went back to school and was trained to learn how to use the stairs by Sheila and how to get up from my bed and get on and off the bath board by Eleanor. Then before I knew it I was going home!

YIPPEE!

If you are planning to have the same operation as I did, don't be afraid to go ahead and have the operation. During your recovery you'll probably start regretting having the operation because I did! After I had my operation I thought I was going to stay in hospital forever! But I tell you it comes out all right in the end and it does help a lot because I'm sitting and standing much straighter.

Thank you to the doctors and nurses for getting me through some of my difficult times.