Tuesday, 30 April 2013

Theatre Date . .

Sunday my pain was up and I wasn't myself. Usually, if somebody brings my chair into my room I get excited because that means we're going out. I was crying and didn't want to do anything. I calmed down eventually but still wasn't happy, I got upset every time we stopped to look in a shop I just wanted to carry on. We didn't stay out long and when we got back I couldn't wait to get in my bed. Dee Dee, mummy and my sisters had a game of mouse trap, Taylor won. They had to leave after that because Ellie and Taylor needed to get sorted for school the next day and have an early night.

Yesterday after all doctors had seen me mummy took me out for the afternoon. We headed back towards home and saw Daddy which I enjoyed. We called in to see Gaz at work, told him its my birthday next week and that I wanted him to come out with us. We didn't do too much yesterday, mummy just had a few appointments to go to. I didn't settle for bed very well last night, was restless so it was quite late before I fell to sleep.

We've stayed in today. Had a lazy day really. Lizzy is taking me into the snoozalin soon. Mummy tried showing me the photos from holiday earlier but she had to stop because I saw a picture of daddy and I started crying then she turned the page and I saw another followed by one of Dee Dee and my sisters. Mummy decided to stop looking at them as I was getting too upset.

Saw the consultant today, she wants me to have my bloods repeated today because a few of my numbers are slipping. I've also put on quite a bit of weight the past 2 days which is fluid. She is going to chase up the date of the MRCP scan they want me to have and I've also been given the date of the 23rd may to go to theatre for scopes and biopsies. It was also mentioned a couple of weeks ago that my jejunostomy may need re-siting because my losses are really acid from there and they shouldn't be so she's also going to find out what's happening with regards to that too. My pain has been up today, I've had to have some extra pain relief. We've been waiting for the pain consultant to come and see us to make sure I'm on everything I should be and if there's anything else that could be done to help me with the pain. I'm just playing with my Lego and duplo now waiting for Lizzy to come get me to go in the snoozalin. Mummy's been Internet shopping for my birthday presents and told me I'm very difficult to buy for! She though she had 2 and a half weeks until my birthday then she realised it was next Thursday so she's trying to get organised now!!

Sunday, 28 April 2013

The End Of The Holiday And Reunited With My Extended Family . .

Tuesday - The day on the beach in Weymouth was great. The weather we had was like we was abroad! Although I got lathered in sun cream I got burnt on my face which caused blisters. I needed oxygen that night, the tape that I had to have on to hold my nasal canulas in place ripped skin off my face so it has been quite painful and a bit of a mess.

Wednesday - We was led to believe we were going back to the beach because the weather was nice, we didn't! It turned out to be another surprise only this time it was to Paultons Theme Park where Peppa Pig world is. My sisters were so excited, especially Taylor-Mae as Peppa Pig is her favourite. Daddy wanted to take me on the log flume with him, Ellie and Taylor-Mae but mummy wouldn't let me. It was too risky for my TPN pump to get wet and it was quite a steep drop as well. I have too many lines to take risks so I sat and watched. We headed towards Peppa Pig world with a few stops on the way for rides and slides that daddy wanted to go on so made Ellie go on with him. From the photos he was having more fun than Ellie on the rides haha. We got to Peppa Pig world, it was amazing. It has been made so life like to the program. Firstly we got our photos done in a studio, I didn't look too impressed on mine even though I loved it at the time. We went on some rides afterwards, I love going on rides. It was so much fun. I was due my meds after an hour of being there so we headed to a restaurant to get some dinner for everybody and so that I could have my dinner time meds. Taylor-Mae couldn't wait to get back to Peppa Pig world. Wasn't long before we were back in there and enjoying the rides. At 3pm Peppa And George made an appearance, Taylor-Mae got a kiss and cuddle of Peppa, she was so happy. Daddy and Ellie had gone for a walk around the Theme Park whilst myself, Mummy Dee Dee and Taylor-Mae looked around the Peppa Pig Shop. They had a few play areas there too so once Taylor had spent her money I was able to get out my chair and have a good crawl around. I enjoyed having some freedom. Mummy tried to take me down the slide but tripped up whilst carrying me, I went down first and banged my head followed by mummy banging her arm and landing on her knee twisting it. It wasn't nice and she wouldn't carry me afterwards. She was so mad at herself for falling with me in her arms. We went and sat down for a bit in the corner near some benches whilst I calmed down. I was ok after 10 minutes, it was just the shock that got us the most. We hadn't realised the time, it was getting late and we needed to get back to do my bag change and bedtime meds. We had a go on a couple of the rides we hadn't been on. I was ok on. One of them but then the next one I'd had enough and was tired. We headed home but stopped at the shop in the main enter acne first so that Ellie could spend her money. I got some wooden blocks which I like and a George Pig teddy key ring to go on my TPN bag. We got home late so we ordered pizza for tea. We were all really tired after all the fun we had.

Thursday - I slept really well, needed oxygen again though. I didn't wake up until gone 9. Mummy and Dee Dee got me sorted and changed when I woke up because I had to go to the hospital for 12 for bloods. It was our last day of holiday before we had to take the long drive back next day. It wasn't one of my best days either, I was getting really upset all the time and also falling asleep a lot. I didn't end up having my bloods done, they didn't know why I was there and what I needed doing so we left. We had been waiting an hour and I was getting fed up. With it being the last day we decided to go back to Weymouth to do some crabbing. The girls loved it. Ellie was the first to catch a crab followed by Daddy and then Ellie again. We wasn't there long, I was getting upset and fed up so we headed back. The weather was lovely so we decided on another BBQ. Daddy really enjoyed playing with the BBQ so was happy when all the girls went to Asda for some supplies! I was falling asleep by 8pm on the sofa so I was put to bed. Mummy Dee Dee and Daddy had to do all the packing and loading the cars up to leave.

Friday - Time to leave and I was still in bed! Check out time was 10am but I was still snoring. Dee Dee had to wake me up because we didn't want to leave too late. We went over to the restaurant for breakfast. It was a nice change and a lovely end to the amazing holiday we all had. We set of at 11.30, Daddy in his car and the rest of us in Mummy's. after 8 hours on the roads we made it back! We ran into 4 separate accidents and then stand stills on the motorway because of extra traffic that was coming from a motorway that had shut due to a serious accident. What a long day. I was happy to see my bed and have a lay down! Dee Dee and the girls got a lift back with grandad after they had helped bring stuff up to my room. I fell to sleep at 8 whilst mummy was still sorting things out. I was in oxygen again but had a settled night.

Yesterday I woke at gone half 9. Mummy said I'd had a few of my ladies in to see if I was awake because they had all missed me. Salena couldn't wait for me to wake up, she was straight in giving me cuddles. Fiona and Lizzy took me in the snoozalin at half 10 so mummy headed home to pick some things up that we had to leave there. I had the day with all my ladies, it was a good day! Whilst mummy was out she got some photos developed of the holiday so everybody could see what a good time we had. She got loads printed off and that wasn't all of them! I was quite quiet in the afternoon and even went a bit sleepy. I soon perked up when mummy stripped me off to give me a soak in the bath. I had phil again last night, he was trying to get a wave of me but I just shook my head to say no, being cheeky and then I laughed. Again I fell to sleep early and before my sleeping meds, it's not been a settled night though. I've been restless and my oxygen requirements have gone up from what they were. Even still my sats weren't great! Got Dee Dee and my sisters are coming to spend the day with me today, which will be nice.

Tuesday, 23 April 2013

Having So Much Fun On The Beach . .

We've come to Weymouth for the day and the weather is beautiful. It's warm and not a cloud in the sky. We've been for a hot chocolate and bought buckets and spades. Currently on the beach loving every minute of it so i thought I'd share the pictures with you that we have up to now from the day ..

Monday, 22 April 2013

Enjoying Our Holiday . .

Up to now this Holiday has been good. We went to a farm yesterday, It was called heavy horse farm. Whilst there we went on a bumpy tractor ride I loved it. I was laughing the whole way around. It was really warm in the morning but after dinner it went quite cold so we didn't stay at the farm for too long. When we got back we just played for a whole before bed. I've been sleeping really well whilst here, mummy got some video monitors so she could keep an eye on me whilst I'm sleeping. This morning Dee Dee took me, Ellie and Taylor fir a walk around the site and we also had a little play on the park. I had to go to the hospital for my regular TPN bloods and because my appointment was at dinner time we couldn't really go anywhere so we stayed in for the day. The girls went swimming with daddy so me mummy and dee dee played a game of buckaroo and with my new duplo. After having my bag change and meds mummy, Dee Dee and the girls went over to the arcades so me and daddy had cuddles and watched tv. Daddy's doing a BBQ now so thought i'd catch up with you all and let you know how things are going. Tomorrow we're going to go to Weymouth for the day. We like it there. Hopefully we'll get to go crabbing too.
Best go, it's getting late.

Saturday, 20 April 2013

The Surprise That Turned Out To Be A Holiday . .

Well, me and my sisters were led to believe that we were going for a day out yesterday. It turned out that day out was actually a holiday in Dorset for 1 week in a caravan!! We was also told that daddy was working away for the weekend so we wouldn't see him but when we arrived at the caravan daddy was already here waiting for us with tea on the table. We were all so shocked and happy. The caravan is lovely, and the haven site is really nice. We haven't explored the site yet because today we went down to the harbour for a look around. We saw loads of really big boats. The weather has been really nice today. It was chilly whilst we was by the sea but when we moved towards town centre it was warmer. After having a walk around we came back to the caravan and we have been playing outside. We've decided to have a BBQ tonight so daddy is doing the cooking. Sooo glad I don't have to eat it if he's cooking!!! I'm just chilling on the sofa watching Britain's got talent and bouncing about. Missing my family on m2 but its lovely being on holiday with my family x

Thursday, 18 April 2013

More Tests To Come . .

My pain has still been an issue past few days, it's been decided now to try fentanyl patches. Prof is worried about the frequency I am needing diclofenac so hopefully now with fentanyl I won't need it as much. After the doctors regular Thursday meeting its been decided that I am going to have some scopes to look at my stomach and bowel. I've had a blood test today to check my acidity levels and I've also got to have a MR scan to have a better look at my gall bladder. My gall bladder isn't working properly and has thick sludge in it which is caused from me not feeding. There's also a risk of gall stones with me being on TPN. I have been hitting the right side of my belly which is where my gall bladder is so it could be that what is causing me all the pain although nothing is certain yet. The tests will tell us to what extent my gall bladder isn't working and then they will decide if I need to have it out.

Tuesday, 16 April 2013

A More Settled Day . .

What a lovely sunny day it's been so far. I have been laid in my bed sunbathing and flicking through the tv channels. I went down to the snoozalin room earlier as well, they put a fan in there and I loved it. I enjoyed putting my face near it. The pain has eased a bit today, I've been a lot more settled and happier. My losses are draining too which makes me more comfortable, pain makes me tense up which then prevents my losses from draining but because I'm more chilled out today they are coming out freely. It's been busy this morning, had just about everybody in my room, it's been 1 in 1 out! First thing it was the Neuro reg, followed by Gastro reg, endocrine reg, lady from social care, TPN Pete, pain nurse, pharmacy, and then endocrine nurse. The pain nurse has spoken about other pain reliefs to use as rescue meds for if we run into these problems again where my pain is up but nothing is working. she cant do that until the pain consultant is back so in the mean time she has increased one of my other regular pain medications. Intestinal failure can be painful, it's a chronic illness in which the nerves flair up at times which causes pain to go up which is what keeps happening with me so we are going to discuss a plan for when this happens so that I can be comfortable. Tonight I've got more visitors too, Daddy, Gaz and Holly are coming. I like seeing Gaz and Holly.

The endocrine nurse has explained things to mummy about when to double and triple doses of my medication and also when to do the intramuscular injection and call 999. I've been put on the paramedic ambulance service list so that they are aware of my problems, treatment needs to be given immediately which is why they are made aware incase of emergencies. They nurse is going to come back tomorrow or Thursday to go through things again and to answer any questions. Mummy said I'm going to have to get another medical alert band and also we have to carry a letter around with us about this recent problem too.

I'm in bed playing with various things and listening to the radio for a bit. All in all it's been a better day than recent days so hopefully things are settling down again.

Monday, 15 April 2013

Painful Weekend . .

What a tough weekend, I've been in so much pain and very agitated. As a result of weekend, doctors said I was fine and there's nothing going on to be worried about. This morning my Gastro team have come to see me and said that I've got to go for an X-ray of my tummy, I haven't got very many bowel sounds going on and also the losses from my jejunostomy should be acidic like they are. The consultant said things could be tracking up which would cause the pain so I may have to have my jejunostomy re-sited again. It's been a while since they've looked down with a camera too so that's something they want to do as well. Hopefully we will get some answers by the end of the day as to what we are going to do. Mummy has git the endocrine nurse coming to talk to her today about rescue meds for me that she'll have to give me if I become unwell and how and when to triple or double doses of my medication.
Had my sisters up with me for the weekend, I like having them around. They play with my Lego with me and give me cuddles. We didn't go anywhere this weekend though, I haven't been feeling great so we spent the time in my room. This morning I did school work with my teacher. I enjoyed it but wasn't fully myself. The sun is shining through my window today, it's lovely. I'm laying in my bed catching some rays whilst watch cbeebies and raiding mummy's purse.

Saturday, 13 April 2013

Agitation And Pain . .

My day has consisted of agitation and pain, given morphine to help which caused more agitation. I think it's fair to say that today has been tough. All day I have been in pain and very restless. Doctors wasn't much help earlier today but came back at 6 to see me and just wanted to do some blood tests. My belly has been hurting all day, I've been hitting my belly around near my stoma site and have caused some trauma as a result of this. I've rubbed of god knows how many layers of skin from my nose because I have been really itchy so it is now very red and weeping. My sisters are here for a sleepover tonight, it's been a stressful atmosphere but hopefully tomorrow will be a better day and a more chilled one at that. Weekend is the worst time to become unwell because doctors that don't know me are scared to mess with me or make changes. Mummy hasn't been happy at all today about things but Rhona was great and tried so hard to get the doctors to see me and make some decisions. Lizzy sat with me today for a while whilst mummy picked my sisters up, she doesn't like to see me unwell and not myself. She kept telling mummy to fix me when she got back. Lets hope the weather is nice tomorrow like predicted then I can get out in the sunshine and that might make me feel a but better.

Friday, 12 April 2013

Result Of Test = Another Problem To The List . .

Had another test today to see how my adrenal glands responded to a medication given to help stimulate them. I didn't show much response so now I have been put on another medication for the near future. I have an Adrenal Insufficiency which could be the answer as to why I couldn't maintain my blood sugars. We don't know anything about the condition as of yet but mummy has been given some information to read up on so hopefully it won't be too complicated.

Today is another day my pain is up. I've had oramorph again but it's had no effect on top of all my other stuff. I've not been happy at all this morning and was crying quite a bit, I don't know what I wanted or where I wanted to be. I'm sat in bed watching tv at the minute whilst mummy is looking as some new vests for me which are very expensive. Despite being very restless, tossing and turning most of the night I slept until 8.15 this morning. My weight is up quite a bit today and my face is slightly puffy too. I have to do another urine test tomorrow to make sure the infection I had 7 days ago has cleared up now. The type of infection I had is quite difficult to get rid of despite the antibiotic I was on.

We've not had confirmation of the day my story will go out on tv but its either today or Monday so mummy said we're going to watch it just in case it's on. I've also had my photo taken again today for another story the communications team here in sheffield are going to do. They are going to share the story nationally to various places online. Mel is coming back later on to show us what she has written and the story she has wrote. It's all exciting stuff at the minute. Hopefully it'll all help and potentially come across somebody who could be like me or may know a way of treating my problems.

Thursday, 11 April 2013

Hypoglycaemia results And An Afternoon Of Filming With Granada Reports! . .

Well, the test didn't exactly go to plan! For once I actually managed to maintain my sugars but why, who knows! Now, for most of you you'd be thinking well that's good surely, and your right, ideally it would be but because I've been dropping my sugars every time I'm off my TPN and within 3 minutes so to hold my sugars for 4 hours is just bizarre!!

The endocrine doctor came to see us today with a result from one of the tests. My hydrocortisone levels were low which could explain why my sugars keep dropping so tomorrow I've got to have further tests. First of all I have some blood taken from my line, then I have to have some medication followed by blood tests every half an hour at first and then every hour afterwards but I'm not sure for how long.

One of my Gastro/TPN consultants came to see me today, they've increased one of my medicines that is for my liver and are also speaking to the radiologist about the scan I had a few days ago to make sure I have no stones in my gall bladder. He said that because I've been on TPN for some time now stones can be an issue and if I do have any then they will think about taking my gall bladder out. Mummy told him about the pain and asked where it could be coming from. It's not clear as to what is causing me pain and could just be something else that we have to just manage. I have needed a couple of doses of oramorph today as well as paracetamol, buscopan and diclofenac.

So, it's official, I'm going to be a star!! Don't all queue up at once for my autograph!! Haha. Rob from Granada reports came to film us today to help us get my story about. He was a lovely man and made us all feel at ease about everything. He did a few shots of me playing in my bed with Dee Dee and then did a few of daddy giving me my dinner time IV's. he wanted to interview mummy then, so they had to go in a separate room for that. We went down to the snoozalin as well to play for a while and get some shots in there. Overall we were filming for 3 hours. Mummy said I did really good and so did my sisters. Hopefully it'll be on tv tomorrow night but if not it'll be Monday he said.

Tuesday, 9 April 2013

Controlled hypoglycaemia . .

After meeting with the endocrine doctor yesterday they have decided they want to run some tests to make sure they aren't missing any other conditions that could be causing me to drop my blood sugar levels. They said its unlikely that there's any other problem and that it would be very bad luck if I did on top of everything else I have going on. He feels it is all to do with the problems I have and that I have been on TPN for quite some time now but would like to do the tests to make sure. Tomorrow they are going to do a screening in morning which is just some blood from my line. It's to test what my insulin levels are whilst my TPN is running. Then a bit later in the day and when doctors are on the ward they are going to stop my TPN! Usually it only takes 3 minutes for me to drop my sugars when my TPN isn't running which is why mummy has to be really quick when doing the bag change and everything else at night. So, they will stop my TPN and wait for my sugar levels to drop. In most people they are ok if their sugars go as low as 3.. For me, I start getting symptomatic when they get to 4 and then get really bad any lower. They are going to wait until it goes down to around 2 and then will take some bloods from mu line again to test the levels when i am hypoglycaemic. afterwards I'll have to have an inter muscular injection to see if that corrects my sugar levels. If not then ill have to have a bolus of glucose into my line and then check my sugar levels again. Once the test is finished I will be connected back up to my TPN and then wait for the blood results and go from there. They said the worst that could happen with letting blood sugars drop so low is loose consciousness or have a fit but it will cause no damage.

Today my pain is up again, I have needed lots of pain relief to help settle things. The microbiologist wants me to remain on antibiotics for a few more days rather than the usual course of 5 days because its my second urine infection in a short space of time. The doctor we saw today is going to discuss with a consultant to see if I need to have my large bowel assessed. I have had a stoma for 10 months now and haven't had a camera test since to make sure my large bowel isn't causing any problems. Basically, the small bowel and large bowel aren't connected anymore because I have a stoma which is at the bottom of where the small bowel ends. The large bowel is just inside my body but not doing anything at all but the surgeon wanted to leave it in there incase there was a chance of reversing my stoma but obviously things didn't quite turn out that way.
I went in the snoozalin today with Charlotte and Dizzy Lizzy! It's been a few weeks since I've been in there because its been busy but they managed to take me today and I had a great time. Whilst I was in there mummy tidied our room and changed the bed sheets, I came back, messed it up and thought it was funny to tip my stoma losses over my bed! Mummy didn't see the funny side though. Oops!! I'm just in my bed now watching I can cook and throwing my cards out my bed as far as I can! Got my sisters and Dee Dee coming up tomorrow and then daddy is coming Thursday then won't be long until weekend and i'll have them all here with me, wonder what our next adventure will be...

Sunday, 7 April 2013

Just For A Change, Another Infection! . .

After being unsettled and in pain for 5 days we might just have the answer. Friday late night microbiology phoned to let us know that my line was growing a bug and to see if doctors wanted to start treatment straight away. I had already been put on antibiotics Thursday so mummy said no and that she'd rather wait until the result comes back fully before starting another antibiotic unless I became unwell overnight. On Saturday we found out that the bug that had grown was a 'staff bug' meaning it had come from somebody who had used my line, but microbiology also said that the bug it is could also be a contaminant, meaning that the bottle used could have just been contaminated already and that's what has shown. The bug took a while to grow which is why that has been suggested. So at the minute it is unclear as to whether or not I have a line infection or not. My urine sample came back and shows I have a urine infection though. The type of bug is sensitive to the antibiotics I was started on before hand which is good but it's also a very difficult bug to get rid of and it was only 2-3 weeks ago that I had it then too. It could explain all the pain I've been in and discomfort. I've still been getting low grade temperatures so we'll just have to see what my team what to do about it all tomorrow.

Yesterday we went shopping for DVDs, games and craft bits for the ward. SwizzlesMatlow did a 2 day table top sale to raise money for myself and also to donate some to the ward for all they have done for me. Adler came up with Dee Dee and my sisters so we could go get all the bits. It was fun, I enjoyed getting out for a few hours with them all. They had to leave just after dinner so me and mummy just lounged in my room for a while listening to music and I played with my new duplo. I love it, been playing with it all the time. At about 4 mummy decided to take me for a walk because the sun was shining and wasn't too cold. I liked getting out for a walk and fresh air. When we got back it was time for mummy to do my usual night bits so we put on ant and dec whilst we got sorted for bed. Not long after I settled off.

After a restless nights sleep and waking up in discomfort, mummy set my pain relief up and within an hour I was a bit more settled and happy. We did FaceTime with daddy this morning, he kept yawning on the screen!! We didn't talk for long because he needed to get out of bed and get ready to come down here because we were going out for the day. They all arrived at about 10. We didn't want to set off late so mummy, dee dee and daddy got all my bits together and got me sorted in my chair. I was excited to go out and so was Ellie and Taylor. We didn't know where we was going which makes it even more fun. My sisters were very excited when we turned up at the zoo!! I was too, I couldn't wait to get out the car. We had so much fun at the zoo, my favourite was the elephants and the train ride around the dinosaur valley. We saw so many different monkeys and they were so loud too!! A found a nice picnic spot and set up to enjoy a sit down for a bit. I was happy playing with Dee Dees and mummy's bank cards whilst they all had their sandwiches. I like to people watch as well, I enjoy having people around me, only some people are very rude and stare but that's ok because I spot them and start waving.. They never know where to look then!! It was after the picnic that we spotted the elephants, oh and the meerkat's, they reminded me of Dizzy Lizzy though because she always talks about them to mummy!! Ellie and Taylor got their faces painted just before it was time to go. Ellie was a flower princess and Taylor was a butterfly. Time to head back, it was getting colder and I needed to be back to have my medicines. Mummy got me into my pyjamas when we got back and I played with my duplo and a couple of my favourite bits of Lego. Daddy, Dee Dee, Ellie and Taylor had to go, think the excitement had tired them all out. We all had a lovely day. Think tomorrow me and mummy will need a relaxing day so I can recover from it. Day trips seem to make me really tired and then I need a day to recover. Hopefully there will be some good films on and mummy will put my bed down to play too. See what the doctors say tomorrow about everything and then maybe know if I have a line infection or not.