Dee Dee's Birthday Weekend . .

Time off TPN has been going ok, my sugars have been low at times but not low enough to have to take further action. Mummy said she has a few questions she needs to ask but hopefully we will continue to have time off to help my liver. Since trying dioralyte earlier in the week it's really upset things, I've been in discomfort and agitated at times too. I'm due to start my next course of decontamination so hopefully that will help things.

Well, it has been Dee Dee's birthday weekend and what a bust time we've had. On Saturday daddy, dee dee, Ellie and Taylor came. I helped dee dee open her birthday presents. We went to meadowhall to do a bit of shopping before I was due to have time off my TPN. I have to have regular blood sugars whilst I'm off so its best to be in my room during the 2 hours. After my time off had finished and I had had all my IV's we went out for a curry, April and Evie came too. It was fun, I enjoyed going up the waitress's dress and feeling her tights!! After we finished daddy took April and Evie home whilst the rest if us came back and sorted things out for bed. Daddy stayed with me for a sleepover and mummy, dee dee, Ellie and Taylor went to stay in a hotel. I had fun with daddy, I didn't want to go to sleep but eventually I gave in, so did daddy!!

Today I didn't wake up until around 8, after being weighed and dressed I had a play with my Lego, daddy's car key and watched tv whilst we waited for the women!! When they arrived mummy got my IV's ready whilst dee dee and daddy got me sorted in my chair to go out. First we went to Weatherspoons for some breakfast. There I kept going in a daze and looked unhappy so mummy checked my sugars but it was ok. Dee Dee needed to go get some new socks so we called at tesco. We didn't want her having smelly feet!! Eventually Dee Dee and my sisters finished shopping and we could set off to where daddy was taking us for a day out. We went to magna science museum. It was freezing inside. I wasn't sure about it for the first hour. My sisters really like it though and loved trying all the different things out. We went in an air room, saw a 'Big Bang Theory' demonstration whilst on the way to the fire room. From the fire room we went into the water room, well that was my favourite. I love water!! I had already pulled my shoes off so when mummy stopped near some water bucket I put my feet straight in, it was so much fun. I wanted to climb in but wasn't allowed. We got really wet in that room so we went into the bathroom to dry off a bit under the dryers. After that we headed to the earth room, I liked playing in the sand for a little while but then I got fed up. There wasn't really anything for me to do in that room. We were all cold and had been there for a few hours so we decided it was time to leave and get some tea. We went to Pizza Hut. That's my sisters favourite. The weekend went really quick, before we knew it it was time to get back because daddy, dee dee, Ellie and Taylor had to set off home.

Once they had gone mummy got my pyjamas on and sorted my bags out. Whilst mummy did my IV's I played with a few different bits and watched a bit of tv. I was getting tired, it's been a very busy weekend for me. It's been really nice spending time with my family, it's nice having them all together. Hope you had a lovely birthday weekend Dee Dee xxxx

Time Off TPN = Success . .

Had a good nights sleep last night. Needed a bit of oxygen at the start of the night but remained in air for the rest. Woke up a bit early this morning because it was noisy so I had some more sleeping medicine to help me settle back off. The day started for me at 8, straight away I had my Lego and cbeebies on. Whilst mummy was weighing me my teacher turned up so once I was dressed I did my school work for an hour. I enjoy my sessions with her. My consultant came to see us today, he decided to try time off TPN because dioralyte was unsuccessful. When home TPN is needed the doctors like to get you down to between 12-16 hours of TPN and the rest of the time off. We tried time off a while ago but my sugars are a big issue. Back then I managed 20 minutes off before my sugars dropped, now it happens in just 3 minutes!! I have always had constant TPN because of this. Long term constant TPN isn't good for you, it completely bypasses the digestive system which causes problems with your liver. I already have some degree of liver damage which my body is coping with at the minute. To try time off today in replace of my TPN I had a bag of glucose running instead for two hours. We wasn't sure how things would go. At first my sugars dropped but after an hour they had come back up. We had to check my sugars every half an hour for the 2 hours I was off TPN. My last sugar we did had dropped again but I was due to get connected up again away. Overall it was a SUCCESS!! We're not sure what the plan is with it yet but because I managed it today we will probably be told to continue over the weekend and see how things go. Only thing with doing this is the increased risk if line infection from accessing my line more. We've thought of ways around it though so if its decided to continue then we can make it work.
I went in the snoozalin today with Sarah and Charlotte. I had a good time. I've not done much today, just watched tv and played with a few different bits. Only 2 more sleeps until I see my family. Daddy, Dee Dee, Ellie and Taylor-Mae are coming to stay the night. It's Dee Dee's birthday this weekend so we are all spending the weekend together. It'll be lovely and we can't wait :)

Trial Of Dioralyte = Unsuccessful . .

Yesterday afternoon after a discussion with my consultant we decided to give dioralyte another go. If my fluid losses increased, i was in pain, my belly got distended or my chest was getting bad we had to stop. We started at 2.30pm at 2mls an hour. As you all know, 2mls an hour is an absolute minimum and is nothing to most but for me it was too much and my body couldn't handle it. About an hour or so after it started I was already uncomfortable and needed some of my stronger pain relief. Mummy wanted to try stick at it which is why I had the pain relief and carried on to see how things went. I settled down a bit after it kicked it but still wasn't quite right. Still hoping that things would settle down we carried out throughout the night. I had a good nights sleep and managed the night without needing oxygen for the third night running. I woke at about 6.15, my belly was slightly distended and again I was unsettled which got worse throughout the morning. I started getting a bit frustrated too. It's how I get across I'm not happy that nobody is sorting me out. Mid morning mummy and Clair made the decision to stop the dioralyte because it was causing pain and discomfort. Again I needed my strong pain relief this morning. Since its been stopped I've been a lot more settled and happier. Mummy really hoped that after having 6months bowel rest things would start working again but as of yet, it isn't. She asked my consultant yesterday if there's a possibility my bowel would start working again but he couldn't give a definite answer, he feels its unlikely because things deteriorated almost a year ago and attempts in the past to try feeds didn't work then either. He said there's room for further deterioration but doesn't feel it will improve. We don't know for sure though, nobody can answer that, In fact nobody and answer most question because nobody understands my condition or knows what it is. He also said that after receiving the report from Birmingham children's hospital it's all irrelevant because since meeting the consultant there I have had 2 more lines put in and got extremely poorly back in December/January. It has now been agreed that if I have 1 more confirmed line infection then I will be going over to Birmingham for a small bowel transplant assessment with the possibility of me needing a liver transplant too. I already have a degree of liver damage which probably won't recover now and usually if you need a small bowel they do biopsies of your liver anyway to see how things are.
Charlotte came to play with me for an hour this morning and dizzy Lizzy kept popping her head in too!! They're a right pair them two when they're together. They had mummy in stitches!! Love my crazy ladies. Salena came in to see me this morning too, she always makes sure she sees me when she isn't looking after me. She's another one of my lovely ladies. Got Clair today, she lets me have her badge to play with and yesterday I had lovely cuddles with her. Just got back from snoozlin, dizzy Lizzy and Charlotte took me. I had a great time and did lots of standing. Lauren popped in to see me and I nicked her glasses!! I was too fast for her haha. Me and mummy were playing earlier, I has my vest on my head and mummy had my trousers on hers. It was funny and I spent the whole time laughing. We also watched a bit of Charlie and the chocolate factory together.
I'm going to get back to playing with my wooden jigsaws now.

A Few More Shots From Our Lovely Day . .

Taylor made a cucumber and tomato train!!

Mummy's Day . .

The day started withering mummy have a lie in. She didnt wake up until 7.15 but I didn't get up until 8.45. Mummy was moaning she had bigger bags under her eyes than usual!! There's just no pleasing some!! Haha. Once we had both got sorted and dressed we had some morning cuddles. Dee Dee, daddy and my sisters turned up at dinner time to spend the afternoon with us. Once I had finished my afternoon medicines we got ready and in my chair to go out. I couldn't wait to go out! We went down to the centertainment centre, it was really busy. The plan was to go bowling first but when we got in there it was really busy and a 2 hour wait to play so we booked the lane and went to get something to eat whilst we waited. After trying a few different places first without success because everywhere was busy we ended up at pizza express! It was ok, I had fun playing with my new Lego Dee Dee and mummy had just bought me from tesco's when they went to get Dee Dee some pain killers. She's a Mard, she's not as tough as me!! Haha. After eating we still had half an hour spare so we went into the bowling alley and played in the arcades for a little but. Taylor enjoyed the 2p machines and Ellie and daddy played on a racing car game. Dee Dee and mummy tried their luck at winning a teddy but were rubbish at it! And I went on a car racing too which I enjoyed and couldn't wait to sit in the seat.
So it was bowling time, Taylor was really excited. We all had such a good time. I enjoyed pushing the ball down the ramp, I knocked all the pins down quite a few times. The green ball was my favourite. We didnt finish the second game because Taylor was getting tired and I was getting fed up so we left and headed back. Daddy, Dee Dee and the girls couldn't stay because it was getting late so we all said our goodbyes. We all really enjoyed the day. Whilst mummy was sorting all my medicines out I was in bed playing with my new Lego, I love it! It's now time to get my pyjamas in and get ready for bed. Night night to you all and I hope all you lovely mummies had a lovely Mother's Day. I know my mummy did xxx

Chilled Day . .

So today has been a quiet day. Slept well and woke at 7. I watched a bit of tv and played with my Lego when I woke up whilst mummy spend hours getting ready!! Once I had been weighed and changed me and mummy watched cbeebies for a little while before putting Charlie and the chocolate factory on. It's my favourite film at the minute. A bit later in the morning we watched happy feet but not all of it because I started getting bored! Auntie Rachel and Alison turned up to see me at dinner time. I emptied their handbag contents all over my bed! It didn't matter to me that I had mixed up all their money, bank cards, make up and whatever else was in there because I had a great time doing it! They had to leave at 2 because they needed to get to Dee Dee to help sort things out for the fundraiser tonight. I went in the snoozalin with Gill for an hour this afternoon, I was into everything and didn't stop. Think I tired Gill out anyway! Not long after I got back from the snoozalin daddy turned up, what a nice surprise that was. Straight away I was into his pocket finding his car key (it's my favourite). We went out for an hour or so because mummy needed to get some things from the shop and then once we had done daddy had to go because he needed to get up to the fundraiser.
Daddy, Dee Dee, Ellie and Taylor are coming to see us tomorrow which me and mummy are looking forward to. It'll be a lovely day whatever we do.

Fixed on watching Charlie and the chocolate factory..

No Changes . .

We've been waiting 2 days to see a consultant about the possibility of trying some dioralyte, still waiting!! They passed messages in to say that we can start it but mummy wants a proper plan in place for it and to know that if things change and I'm not tolerating it it will be stopped immediately and not have to wait for decisions. Mummy also is wanting to discuss things with my consultant about Birmingham because we received a letter from them yesterday summing up the discussion between the consultant and mummy back in December. Things have changed since then and I've also had 2 new lines too! Having problems with my line changes the plans because if it keeps happening my arteries will start to be naughty and play up.
It's been a slow day today, nothing has happened and we haven't seen anybody or been anywhere. Me and mummy watched a film earlier though and we also played some Lego together. I'm just watching a bit of cbeebies now but it's a bit boring. I haven't been in the snoozalin room for a few days but that's because there hasn't been enough staff on to take me in and play.
I've still been needing oxygen at night, it's been for the past week or so. We don't know why, probably just another one of them things we never will know. I've got my sisters, daddy and Dee Dee coming to see me on Sunday which will be nice. We haven't seen them since last Sunday!
I'm now flicking through my telly trying to find something to watch but it's rubbish. Daytime tv!! What ever happened to showing good films??

Worth A Try . .

Things have been fairly stable for the past few weeks. I've had a few blips but overall I'm doing well. Mummy discussed with the doctor earlier things that will get mentioned in the doctors meeting tomorrow. Those things are my weight, un explained drops in my blood pressure and also a possibility of starting on some dioralyte into my jejunostomy to see what happens. Dioralyte is something we'd try first to see if I tolerate it and if I did then the next step would be milk feed! A few months ago when we tried this it wasn't successful. I was only having 2mls an hour but that 2mls caused my belly to go big and my losses from my stoma and gastrostomy to increase drastically. It's been 7 months since I had any type of oral feed so let's hope that after that amount of bowel rest things might just work?! It's always good to try again and not give up on things completely. Got to live in hope, hope that things may just start to work again.
My stoma nurse came to see us today, the skin around my stoma is really sore and broken down. We think I have turned sensitive to the adhesive in the bags for whatever reason so Helen has spoken to a nurse at the northern general and has ordered me some new things to try. We don't know why I turn sensitive to things I have used for some time but its just another one of those mysteries. Helen and mummy wrote down my prescription for my stoma supplies too so that it can start going through ready for when I go home.
I went in the snoozalin today with dizzy Lizzy and Charlotte, they're a right pair them two! Haha. They're my ladies though and I wouldn't have them any other way.
Bupa are delivering some of my home supplies tomorrow and then next week the Bupa nurse is coming to sign mummy off from more training. An MDT meeting is also being planned for either next week or week after. That's a meeting where all people involved in my cares get together and discuss future plans and any other things that need to be done. It is also to tie any loose strings on things that are being put in place to go home for home life.
Mummy said I've got a few visitors coming to see me over the next few days, I'm looking forward to that.

Iron transfusion . .

The iron transfusion happened this morning. It wasn't safe to do yesterday because it didn't arrive up to the ward until 5 and at that time there wasn't enough staff around incase anything went wrong. The transfusion lasted an hour and the first half an hour I had a nurse in with me and doctors we aware and on the ward for precaution. When it first started going through I went really red and had bad coughing fits but other than that things went well and my obs remained stable. The doctor said its a one off treatment and may possibly have to be repeated in 6 months time, hopefully though the results will last longer than what the blood transfusions did.
Saw the usual Gastro doctor this morning, no changes are being made to my care plan, just to continue. It was also the TPN ward round today, a few changes are going to be made in my nutrition because my weight is going up too much now. It's not as simple as just reducing calories though because last time we did this my blood sugars got effected and in TPN it's not just fat it's glucose too. If they reduce fat but not glucose I'll still gain weight and if they cut glucose and fat my sugars will be effected again so they need to find the right balance.
In myself today I feel ok, I'm getting bits of pain but that's not stopping me from being cheeky and making mummy laugh!! Clair's back on today so I've raided her pockets and nicked her badge! Salena came to see me for 10 mins (hide in my room) earlier and play with my puzzle pieces. I have so many lovely ladies that fight over me and come spend time with me. I've got a quiet hour so thought I'd update all you lovely people. I had a visit from Ann and Heather earlier, that was a lovely surprise. Heather was in hospital a few months ago very poorly but she is looking really well now.
It's the fundraiser on Saturday at the golf club, body shop party, disco and raffle. It's lovely how people are wanting to help me so much and are organising all these events for me. There's a few other events that have been talked about too. Thank you, it means a lot to myself and my mummy and we are very touched by all the support.

A Night At HOME . .

Yes that's right, Saturday night I had a night at home!! After mummy rushing around getting all my stuff together, daddy picked us up and we made it home at dinner time where Dee Dee, Ellie and Taylor-Mae were waiting for me. I couldn't wait to get out the car and into the living room on the floor. I'd only just got through the door and already putting my demands in for the tv to be put on and Dee Dees pockets emptied!! They should of had these things ready and waiting for me, you'd think they know by now!!! Haha. We had a few hours at home whilst mummy was getting organised with all my equipment and everything else, which at that point she had realised she didn't have any 50ml syringes for my IV's. oops. We was planning on going to Trafford centre so on the way we stopped off at the local hospital to see if they'd give us any instead of having to head back to sheffield for them. Luckily the sister who was in A&E was lovely and happy to help. We continued on with our journey to Trafford centre. I like it there. We walked round for a bit before going for a bite to eat. Afterwards mummy and Dee Dee took my sisters into build a bear and I went for a walk with daddy. Mummy took me and treated me to some new Lego. Couldn't wait to open it!! It was getting late and time to leave so we loaded the car up and set off. Mummy then realised she had forgotten the charger for my pump!! She wasn't best pleased. Daddy went to get it when we got home whilst mummy and Dee Dee sorted us out. It turned out to be a late night for me, I didn't manage to settle until half past 11, mummy had to get in bed with me. I slept until 7 though then it was none stop again with medicines and sorting everybody out. After my 12 o'clock medicines, daddy took me out in the car for a while because I was unsettled and upset. We went out for dinner with Dee Dee, Cheryl and Amber which was lovely. Went for another drive after that because was unsettled again. Had to set off back to hospital at 5 so when I got back from the drive I had a little play for a bit and then got changed into my onsie before heading back. When I got back to my bed I fell to sleep not long after and that was me for the night. Sleep reasonably well and didn't need oxygen for the first night in a week.
It was nice being at home, just a bit strange. Hopefully it'll get easier soon.

Since waking up this morning I've not wanted to play. I had my stoma bag changed as soon as I woke up because it was leaking but then wanted my quilt again and went to sleep for an hour. Since then mummy's tried getting me to play and folded my quilt up but I just want to lay down with my quilt. Usually, this is the start of something. Hopefully though this is not the case. See how things go today. Doctors are on the ward so see what they have to say. I'm also meant to be having an iron transfusion today because my HB is still hovering but also my iron count is out so best way is an iron transfusion rather than blood! Blood transfusions are obviously from other people and because of the problems I am having the blood won't last, it'll just mask the problem and that's because it's from somebody else. I will update later on the transfusion. It lasts for an hour but is a risky procedure and can have problems! I will try my best to be good though...