Memories last forever, there for keeps!

Hello everybody :)

Yesterday i decided to write about Joe and your feedback was amazing so thank you for that. Whether you left a comment on facebook or on here i just wanted to thank you.
Writing about Joe made me think about the time i have spent on Ward 14.
There have been some good times and some bad times.

Memories last forever, no-one can take them away; there yours for keeps!
Boothall Children's Hospital; Ward 14!
So here goes. Let's see how much my brain has stored:

- One of the very first memories i have is dancing to Twist It (Lennie Henry) during annual reviews. Prof David thought i was very entertaining :)
- I had a good childhood and was rarely on IV's. However, when i began to grow pseudomonas frequently, they brought me in for IV's. And the first time i went on ward 14, i remember getting lost and taking a liking to one of the nurses. She was called Anna. Anna became my named nurse (this is a what you’d call a favourite; it meant that whenever she had a shift, she took care of me)
- I had an allergic reaction to Ibuprofen and (WARNING: If you are eating you might not want to carry on with this bullet point!) I was throwing up red, thinking it was blood! I was delusional because of a temperature and was accusing Anna of trying to kill me and putting me in the naughty girls home. You know the one your parents threaten you with when your younger. :D !! I thought my mum had put me in there. Anna explained I was in Boothall on IV’s.
- Jo was a bubbly nurse who usually worked nights. She was really lovely and she often come in with a cuppa for a chat when most kids were asleep. Later, she left to work on ICU and I didn’t see her again.
- When I had first started staying over night on my own; at 9pm they decided we had to move wards because of lack of staff. We moved to Ward 12 and I was so scared I rang my mum and dad crying asking them to come and stay with me. I had been put in a cubicle that was out of sight and the bottom of the ward and I was scared that anything could happen and no-one would know about it. So my mum stayed with me that night.
- Remember in my previous blog, I mentioned three other people? Well, Maggie was an auxiliary nurse and she used to walk me, Joe, Jamie and Alethia in a single line file to the venders in the canteen, ths was to stock up on treats : )
I remember Maggie telling us a ghost story once. She said the corridors was as cold as they were because the ghost of Lord Boothall walked them, looking for his wives and girlfriends.
- She said, that Boothall used to be a mansion owned by Lord Boothall and he had many girlfriends and many children. The house caught on fire and everyone inside it died; however, Lord Boothall’s body was never recovered. Therefore, he haunts the hospital looking for the ward. Hence why Joe used to ring me when it was dark; bless him!
- They have a school at Boothall and when you didn’t go to your usual school; you’d go to BMCH high (as we used to call it). It was rather funny though as each CF had to go in a separate room because we can’t mix. The teachers used to run around like loon’s! We’d be spilt up like naughty kids.
- On the way to the school, me, Joe and Jamie would call at the hospital shops to stock up on sweets to keep us busy whilst doing school work.
- I remember, a girl named Sam (she had diabetes), me and Jamie complaining about the food and the canteen staff’s attitude to PALS (patient advice liaison service) We thought we were dead cool.
- I have a clear memory of being very annoyed when my snack box didn’t arrive on the ward. This obviously was an outrage!! Haha.
- During my time on the ward, when I didn’t have to stay in; I’d wake up, get dressed, have a brekkie, do physio and rush outside to get to my normal school.
- One night, when I had just started to stay in on my own, a lad with CF came into my room, with rubber gloves, an apron, and a knife from the kitchen saying he needed to do an operation on me. I was so scared. I pressed the nurses button and one of my all time favourite nurses came running to the rescue.
I’d just like you to picture this in your head:
A women standing at 5 foot with glasses on the end of her nose, a bigger sized lady and a short bright blonde bob in her late fifties threatening a ginger 6 foot 7 eighteen your old boy to get out of a girls room before she clipped him round the ear.
Sue Mac is an almighty LEGEND!
That memory definitely fails to sneak away from me. The boy was later put on a psychology ward.
- On the subject of Sue Mac, she had an obsession with my dad’s legs … no joke! She absolutely adored them; my dad has a soft spot for Sue I reckon
- Ward 14 has recently been re-decorated (thankfully) however, before they did this I would like to take a moments silence for the colour I used to wake up seeing on the walls in the morning. … … … … … … … … … … …
Sick pale green!! I know it really cheers you up when your staring at those four walls all day :D Haha.
- Before I had a port-a-cath fitted, I used to have canulas and long-lines (these are tiny tubes inserted into a vein to administer IV’s)
Personally, I loved having long-lines put in … we were given Entonox (laughing gas). I distinctly remember, feeling completely out of it and on cloud nine. Good Times!!
- Something else I just want to add is that whenever I had Entonox I used to hear circus music in the background. Weird but true!
- All Cystic Fibrosis sufferers have to have a glucose test to see if we have CFRD (CF related diabetes)
This means you have bloods taken and then you have to drink a lot of litres of glucose (I cant remember the exact measurements) and then 2 hours later you have another set of bloods taken.
The first time I had this done, nobody told me you could drink ‘original lucozade’. Unfortunately, I was left to drink sterile water and pure sugar mixed together (about 10 tea spoons of sugar) I have never heaved so much in all my life!
- My mum learnt to do home IV’s eventually and I no longer had to be admitted. Well, unless you become ill or need operations etc. When I had my bronchoscope, after coming around I was really hyperactive and giggly (this is unusual as I’m usually really weepy and crying all the time) Anyway, I woke up to find a nurse called Katie dragging Jamie to my cubicle window to wave at me! She did this because I hadn’t seen him for roughly 2-3 years. ‘Apparently’, he remembered me, but from the sheer horror on his face … he was either embarrassed or had no clue who I was. Cheers Katie!!
- Well like I said, my mum learnt to do home IV’s but last year I was admitted regularly and had to stay in as I needed oxygen. I had visitors frequently (thank you everyone that came to see me)
- The food sucked! So I used to ask all visitors to bring me some form of food (I hinted many times for McDonalds)
- One visitor who always brought me McDonalds was …my cousin Samantha. She's a good’un!
- The first time she came with McDonalds, I needed some creon so she went to ask the nurse for some, “food tablets” ;)
Clare (the nurse) looked at her and then asked whether I had creon 10,000 or 25,000! Samantha didn’t have a clue!
- Samantha visited often and we got bored easily. I remember deciding to see what would happen to my saturations if I turned the oxygen right up. I nearly blew my head off. Samantha found this amusing
- While I was in I got a lot of coursework done and the nurses used to help as much as they could but unless you were asking them how to draw up ceftazadine .. They had no idea.
Except Jaynie, who rang her dad for some info on WW1 as my history coursework was due in. He helped loads, so thank you Jaynie’s dad.
- One of my best friends came to see me after my bronc, we were about to get the results when she turned up with her dad. Her and her dad are like family so we had no problems them sitting in. The results of the bronc weren’t good as we were faced with the operation or no operation ultimatum. I turned to look at Taylor as I knew she had no idea just how serious CF could be. She looked devastated as he explained what the operation entailed. I felt more gutted that she had to hear it all then I was about having to have the op. I knew it was killing her having to hear how major the whole thing was.
- There was a little old Irish lady who used to work nights; she was lovely and she made me horlicks one night and brought me an extra blanket because I was cold. Thank you Mary!
- I had a reflux test which is a tube up your nose and down your throat that sits at the top of your stomach. At the hospital I have a reputation for smiling and being upbeat however, if you could have seen me on this particular day … you’d have seen that I was not impressed!! Haha!
- During the time I spent at Pendlebury, (my op), I gained a few extra memories here are a few:
* a junior surgeon, eating all my sweeties (Alex)
* me bribing this student to gently take me drains out and he could have more haribo!
* Naming my drains Peter and Paul
* The first time I walked after my op, I felt unbelievably dizzy.
* I had my op on a Thursday and I cant remember anything untill Sunday.
* Me not liking my physio because she made me really work.
* My dad staying with me for the entire hospital stay.
* My mum staying with me also.
* Walking outside to go home for the first time.
* Getting a lot of visitors!
* My friend Emma coming all the way to Pendlebury just to see me. I really appreciated that.
* Having my hair washed for the first time It was really funny because I couldn’t move off the bed so they pulled out a little paddling pool on HDU and layed my bed flat, I had to put my head in the paddling pool while they washed my hair. It was very funny.

I have just realised how much I have written and I believe I should stop now
Thankyou for reading and keep your eyes peeled for the following blogs:

* CF and Frienships
* Cystic Fibrosis
* Music
* ‘Music 4 Life’

Thank you again for reading and your comments :)
Take Care, Sophie xoxo
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  1. Well i have read all these blogs that you have put up and i thought i would add to these from your early years of which you might not be able to remmember, Well you was 13 months old when you was diagnosed i remember me and your dad taking you to the doctors and the doctor passing you off as just having a cough until one christmas i demanded the doctor to come out and see you as you was coughing loads and you always had a ruttle in your chest, the doctor yet again fobbed me off with some more antibiotics it was then we decided to change doctors , It was Dr Walton who listened to us and sent us to Oldham Hospital for a sweat test, The results came back as abnormal reading and therefore they sent us to Boothall where yet again another sweat test was to be done, The results came back the next day when Professor David phoned us to tell us the news that you had Cystic Fibrosis we didnt have a clue what it was never heard of such a name, We had to go on ward 4 the following day , That night we just looked at you not knowing, You was admitted onto the ward and we was bombarded with nurses my first impression of the room we was given was OMG , There was a cot in the room that was a cream coloured metal thing i just looked and said there is no way she is going in that, i thought we was special as we had a room and was not on the open ward (I didnt know that CF couldnt mix )The nurses came in and took details and said they needed to take blood i just looked at your dad , next came in the Professor and his possy of doctors who then asked us did we know what Cystic Fibrosis was ?? we didnt as they explained this to is i just looked at your dad and put my head down , they then went and we had a big cuddle me your dad and you in the middle , next came the Physio who then showed and learnt me and your dad how to do physio we was convinced that it was hurting you but you always fell asleep or just watched television (up side dowm )
    next came the Dietician with some tablets called Creon these are to help her digeat her food , how was we to get you to take these tablets they was huge, your dad came up with the idea of opening the capsual and emptying it into a yoghurt mmmmm crunchy yoghurt he used to say to you , you soon adapted to it and the other medication you had to take,after a couple of days on the ward they allowed us home with mounds of leaflets and medication, The Cystic Fibrosis nurse was coming out to see us at home as well, they was always on the other side of the phone if we needed them ,
    Your firat admission on to ward 14 for Intravenus antibiotics was a nightmare you had cannula after cannula i couldnt go in the treatment room with you i used to send your dad (poor dad it hurt him watching) i used to sit outside or in your room and to this day i can still hear the screams you used to to do telling them to get off you, you then would appear all sweaty in your dads arms with your bandage around your arm, wrist (where ever they got a vein),Then the nurses would appear to administer your IV and you wouls scowl at them,watching there every move. I used to stay in with you when you was little (you never stayed in a lot )they used to like topping you up with IV to boost you , and when the cannula went i used to be on the phone in a panic to your dad he would arrive not long after to be there , i remember once when you was in and you always entertained the nurses and doctors on the ward always singing and dancing, always smiling , until one day you was fast asleep and i needed to go to the toilet so i sneaked out of the room , when i was coming out of the toilet i heard a scream and shouting MUMMY !! WHERE ARE YOU , over and over i ran into the corridor and saw you shouting and crying looking in the cubicles waking the whole ward up,
    You did dance all the time for the doctors at review day we just hoped you didnt break into your song of ALICE ALICE WHO THE F**K IS ALICE of which your dad used to have you singing to everyone,
    i will comment more as i go on i have nearly 16 years of things about you Miss Sophie Jayne Wheeler Love you loads xx Mum XXX

  2. Hi hun another great blog i think your mum an dad have shares in the Haribo sweets ha ha,Paula your comments are brillaint and yes i am sure there is loads more to come we all remember our little salty baby ha ha .xxxx