A Quick Update . .

Things are still a bit rough for me at the minute. We are still struggling to get on top of the pain, most nights are restless ones with barely any sleep. Days are long and some days are spent sleeping and others are full of agitation and discomfort. I've not been able to go out for the past 2 weeks because of the NCA Fentanyl I'm on, mummy isn't allowed to use it as its a nurse controlled drug and not something they allow at home. Nannie, Ellie and Taylor came up to see me on Saturday which was nice. I had a little play with my duplo with Ellie and Taylor before I got tired and wanted a sleep. At that point they all went to do some shopping whilst I got some rest. Mummy went home today to see my sisters, I was asleep all morning but when I woke, Dani (my nurse) got me sorted and took me for a walk in the park for half an hour. I enjoyed that. Recently I've been having quite a few vacant episodes, this is something I started with 18 months ago but we got it sorted with medication but its starting again now. Mummy said she'll talk to my Neuro doctor about it tomorrow. 

So, maybe wondering what the plan is with my as I've mentioned previously that we should be getting a plan of action from my doctors. We still have no plan. There has been a mixture of opinions between the radiologists and my scans of my Gall Bladder. It has now been decided that we have to call an MDT meeting to be held in a few weeks time to discuss where we go from here because at the minute, doctors are stuck and don't know what to do for the best. In the mean time, the doctors involved will be discussing things between them and with others to hopefully pull a plan of action together. I'm to carry on with all the pain reliefs I'm on as long as its needed. 

Things Are No Different And We Are None Of The Wiser . .

Again, I apologise its been a while since an update but to honest things are still no different. We still are none of the wiser as to what the plan is and pain is still a big issue! Weekend was difficult, Friday was a restless night, finally falling to sleep around 6am and didn't wake until 12.30 but once awake the pain kicked in again and it was difficult to manage once it was bad. Saturday night I had no sleep at all and didn't make up for it in the day either on Sunday. Pain was really bad and I didn't settle at all. There was no pain nurse around and the on call anaesthetist didn't know me so didn't really feel happy to do anything different with pain relief. 

Yesterday we was told my surgeon was coming to see me. We waited.. It got to 12.45 and then we was told he wasn't coming and that he wanted to speak to the gastroenterologist before he came to discuss things with mummy. Hopefully he'll come today. We've been told that the doctors have looked at all the ultra sound scans and on the most recent one they got a really clear view of my Gall Bladder and it is very abnormal. It's enlarged, inflamed and has thick jelly in it. It also had infection which I am on 2 antibiotics for at the minute. They said its been like that for quite some time now (since December) but back then they thought it was just infection. I got really poorly back then, can you remember? I also ended up having to have my line out because infection had spread to my line and also into my blood, twice. Once I had a new line put in, it fell out so had to have another. Mummy is worried that a similar thing could happen again if infection starts spreading. Up to now though, I have responded to the antibiotics and my infection markers have come down. 

Until the surgeon comes there's not much more I can tell you about it all. I will update once we know what's going on. 

Hoping For A More Comfortable Weekend . .

It's been a few days since I've last updated so thought I best had. Pain has got worse which led to only 2 hours sleep Wednesday night. My days have consisted of laying down, little spells of playing and naps in the day. Wednesday my meds were changed a bit, some stopped, some increased and one introduced. The one introduced was to help with sleep. It didn't work. The pain just seemed to get the better of me which resulted in a very restless and uncomfortable night. Last night was a bit better because the pain nurse started me on an NCA. It's a continuous infusion of pain relief with a boost button to use when the pain got worse. I am only using the NCA for the boost though because they have decided to keep the fentanyl patches on as my continuous pain relief and have a button for a boost of fentanyl. I have needed this a few times and it worked for me because it helped me to get comfortable again and manage sleep. Carly is getting the doctors to change my sleep meds back to the ones I used to have as the new one isn't doing anything. 

The Gastro consultant came to talk to us yesterday, it seems my gall bladder is what is causing all the problems. In the meeting on Monday it was decided that my gall bladder needs to come out. It is abnormal, not working properly and full of sludge. It was thought that back in December when I got poorly it was my gall bladder but they thought it was infection so treated me for that, now because I am showing symptoms and in pain, its more than infection. I was getting temperatures yesterday so rather than wait, the consultant jumped straight in and started me on antibiotics. The worry is, if my gall bladder isn't working properly and could be inflamed, it could have infection which then could track elsewhere around my body. My line is precious and we are protecting it because as I've said before, 1 more line infection then its off to Birmingham Children's Hospital I go for a small Bowel and Liver Transplant Assessment. This could be what happens in the future anyway but for now we aren't ready for that chapter yet. 

My surgeon hasn't been around this week, he didn't attend the meeting on Monday but sent another surgeon on his behalf. That surgeon hasn't come to talk to us of the outcome but we have been told by the Gastro team what was discussed. The surgeon that attended wants my surgeon to come and discuss things with us, he should be coming to see us on Monday. I was booked in to go to theatre on Thursday for the Endoscopy, Colonoscopy and Biopsies. That has been put on hold for now. The reason behind that is because its felt my Gall Bladder is the cause of the pain so its more important to get that sorted. Hopefully Monday we will find out when this will happen. If I recover ok from having my Gall Bladder out then they will plan for the Endoscopy then but if the pain has subsided it may not be necessary to do it. I am a high risk for Anaesthetic and they don't like to do it unless it absolutely necessary because of how complex I am. Doctors are scared to do things with me too which causes a problem over weekend if I become unwell. They don't like to make decisions because most don't understand my conditions and it confuses them. 

Hopefully weekend will be a bit better than what the week has been now that I have the NCA. I'm not able to get out and about now but as long as I'm comfortable I don't mind. 

My ever expanding machinery that I'm connected to..  

Sleepy Day . .

After a restless nights sleep I didn't wake until 11.15 this morning. I managed to stay awake long enough to get weighed and changed but that was it, was back to sleep at 1 for just over an hour. Once I woke I played with a couple if my Lego pieces and my new blocks Ellie bought me for my birthday but that's been it really. Been laying down a lot and grinding my teeth too. My losses have reduced quite a bit today and my urine output isn't as good as usual. Prof came to see me today, putting some plans in place for a staggered discharge. It was also the meeting today with radiologists, surgeons and gastro amongst others. My case was being put forward, feedback from the meeting hasn't been discussed yet so we don't know the plans yet. Mummy went down to view a bed for me today, a company brought one and set it up to show her. She said it was great and just what she had in mind for me. She has to view 2 more on Thursday and then make a decision as to which one is best for me and then the request for it can be made. It'll take about 3 months for the whole process before I get my bed. 

Maybe tomorrow will be a better day and I'll see more if the day. 

Perfect End To My Birthday Celebrations . .

My birthday this year has been great and I have been spoilt rotten. Thank you to everybody for my birthday messages, cards, presents and money. I've not fully been myself for my birthday but I've not let that get in my way of enjoying it. We went to meadow hall Saturday to exchange some of my birthday clothes for bigger sizes. It was so busy! We did a bit of shopping and had a drink in costa. I was getting a bit upset so whilst the girls had a few more things to do, daddy took me for a drive and then a walk in the park. We met all the girls back in my room where we cut my birthday cake Dee Dee had bought me. It was a bright yellow Lego one with a Lego man and some Lego pieces on, it looked really good. My m2 family arranged a party tea for us in my room, we all enjoyed that. It was time for Dee Dee, Daddy, Nannie, Ellie and Taylor to go. Once they had gone, I had my meds and TPN bag change and not long after settled off to sleep. 

I slept quite well last night, woke early again though and couldn't settle back to sleep. Mummy and myself had a lazy morning before getting ready to go back home way to meet up with everybody for TGI Fridays. We left just after dinner to pick Dee Dee, Ellie and Taylor up. We met Daddy, Gaz and Holly there.it wasn't that busy today so it was nice. After everybody had finished their meals the staff at TGI's came over and sang to me, I was too busy raiding mummy's purse! Time went so quickly and before we knew it we had to set off back. It was lovely seeing Gaz and Holly again. 

Been playing with a few of my favourite Lego pieces and watching kindergarten cop. 

Tomorrow is the day we find out either a plan or a discharge date if doctors are doing no more with me. Also we have a rep coming to show us a bed. Another rep is coming Thursday. Hopefully soon we'll find the ideal bed and then I'll have a safe comfortable bed at home. 

I will update tomorrow with the outcome of the meeting discussing my fall bladder issues, scopes and scans. 

Birthday Boy . .

As most of you know, today is my birthday. I have had a lovely quiet day opening presents and just being fussed over. I got lots of presents and cards. Thank you to those if you who wished me happy birthday and for cards and presents, it's very lovely of you. Ive had clothes, shoes, Lego, balloons, puzzles, money and other things too. 

I've not been myself past few days, been laying down a lot and even falling to sleep in the day! Those who know me know that this means something isn't right, me being me though, I'm not showing what it is just yet! Today has been no different, I've laid down a lot with my duvet and also fell to sleep for an hour late afternoon. Mummy's hoping its just a blip and nothing will come of it, time will tell. Saw doctor this morning, no changes, just waiting for this meeting on Monday to see if a decision/plan has been made with regards to my gall bladder. 

Saturday I've got Dee Dee, Ellie, Taylor and Nannie coming to see me for the day and to bring more presents. Looking forward to seeing them all. Tomorrow we're going to have a lazy day and rest ready for the weekend. Sunday we have a table booked at TGI Fridays, Gaz and Holly are coming too. Looking forward to that, I like going there. Hopefully Gaz will fill his pockets with plenty of things for me to pick pocket! 

Making The Most Of The Sunshine . .

Well I haven't let pain stop me from enjoying the sun! Daddy, Ellie and Taylor came up yesterday afternoon so we decided to go for a walk. We went to wetherspoons and sat outside in the sun for a drink and some dinner before heading over to the park for an ice cream and a crawl about on the grass. I love being outside. Crawled over to a group of girls who were sat near us, unlucky for one of them though because i have a thing about glasses and hats, people can't wear them! Swiped her glasses from in top of her head! Oops. She was ok about it though and laughed it off. We didn't have long in the park because Ellie and Taylor had to get back home. For the rest of the day I played with mummy, my Lego and listened to music before my medicines were due and time to wind down for bed. 

Slept well again last night, woke a bit earlier this morning but was happy enough. My urine output has been better past 2 days which is good. We seem to be a bit more on top of my pain today so it's been a bit of a better day. Had my occasional blips but overall it was good. Went to spend the day with nannie and Taylor today. Well it was only a few hours with Taylor before she had to go to nursery but it was still nice. We met them in New Mills because mummy wanted to get my hair cut. I enjoy seeing billy barber, she s really good with me. Taylor loved her little doggy Lola that was in there today. She was very cute though. From there we nipped to the card shop then back to nannies because I needed my midday medicines and Taylor needed dinner before school. I had a play outside on the blanket with some blocks and stones whilst I had my medicines. It was time to drop Taylor off at nursery, she was excited to go and couldn't wait. We carried on through to Buxton afterwards for a look around. We headed to one of my favourite places, costa coffee! I cant drink their drinks but I like going there. We didn't have much time left because Ellie needed picking up from school so we had another look around next before setting off back. We just dropped nannie off at home, we didn't go in. She needed to get changed for work and go pick Ellie up so we headed back. I was in a cheeky mood when we got back, I was laughing and smiling at everything mummy did. We had a laugh, it was fun. I find it funny and tell mummy no when she tells me I'm beautiful and will be 7 in 2 sleeps!! 

A Tough Weekend . .

Thursday after the doctors had been mummy took me out to get some fresh air. We went on a bus to meet up with April and Evie for the afternoon. It took me all of about 5 minutes to trash her front room with toys everywhere!! After a little play we went for a walk around the park, the weather was lovely and quite warm. We was going to go sit in the beer garden for a bit but Archie was due back from school and we didn't have time so instead we went to a cafe which was closer. The afternoon went so fast, before we knew it we were heading back on the bus. We got off a we stops earlier to have a walk around boots in Broomhill and from there walked back. It was a lovely afternoon with nice weather.
Thursday night was another restless one with not much sleep. I woke up early hours and had to have some more sleeping medicine to help me settle back off.

Friday we had a day in. I did some school work in the morning but wasn't really feeling up to much. Later in the day the occupational therapist came to see me, they are starting to introduce the hoist now because I'm getting big. At fist I didn't like it, it was scary and upset me. I soon came round though and couldn't wait to get strapped into it and be lifted. Mummy said I did very well and she was really proud of me. Mummy put my bed down to the floor after the occupational therapist had gone so I could have a play on the floor with my bricks. Didn't stay out of bed long because the pain was making me agitated so I was getting in a big tangle with my lines and bags. Dee Dee, Ellie and Taylor surprised us at tea time with a visit. I like having visitors. They didn't stay too late because the girls needed to get back to get sorted for bed.
Pain was still an issue for me Friday although it was only at times and not so much continuous.
Sleep wasn't Good Friday night either, very restless again.

Yesterday after mummy had sorted me out in the morning we headed back to meet Dee Dee, Ellie and Taylor. We went to the Trafford centre for the afternoon to do some birthday shopping for me. I'm not sure what I got but not long until I find out. Can't wait to rip all the wrapping paper up Thursday morning!! We got back late on Saturday.
I was in oxygen all of yesterday because my breathing was faster than usual. I wasn't happy with having it on and kept ripping it off my face. Pain was a big issue, was crying most of the day and if I wasn't I was agitated and restless. I was making distressed noises instead of my usual happy ones. When I got back I had all of my pain relief but didn't settle for bed until 10, I just couldn't wind down. Eventually when I did though I was very settled and had the best nights sleep in a while not waking up until 10am.

Today has been a quiet day. Pain has been up but I've been a bit happier in myself. I had to have my bloods done today because my urine output was very poor yesterday. They are wanting to check my albumin levels because I hold fluid in the wrong places which makes it difficult to shift, if my albumin is out of range then the fluid sits in my tissues which causes the puffiness. they didnt want to pump mire fluid into me to make things worse so until my blood results are back mummy has ti hold off doing my replacement fluids. I put on 550g of fluid overnight and woke with a very puffy face. The excess fluid is causing me to gulp air again, this happens when I have too much on board and I can't seem to cope with it. Despite this the day has been a bit better, I've not been upset and have managed more smiles and even laughs today. I went in the snoozalin for a little while earlier whilst mummy nipped out. When she got back she ran me a bath so I had a good splash in there. Baths are my favourite. Well any water is! Been playing with my favourite bits of Lego since I got out the bath and watching cbeebies.
Got my daddy, Ellie and Taylor coming to see me tomorrow. Mummy said if the weather is nice we will be going out for a walk somewhere so that should be nice. Hopefully I'll have another good nights sleep today and the pain will have settled a bit tomorrow.

More Pain Relief . .

The pain consultant came to see me yesterday and has put me on some more pain relief only problem is, it takes around 3 weeks to feel effects from it. It's also going into my jejunostomy tube which goes into my bowel so how much of it i'll absorb is anybody's guess. I had an ultra sound scan yesterday, they wanted this doing before the more in depth scan of my gall bladder was requested. The MRCP scan is expensive so they wanted to make sure it was necessary to do. The ultra sound showed that my gall bladder is full of thick sludge, the radiologist was also looking for gall stones which he couldn't see but he said because of the thick sludge it could make it difficult to see them. He also said that the sludge could be what is causing me pain and that he was going to discuss things with the surgeons. Today is the Gastro teams big MDT weekly meeting where they discuss their patients and decide plans of action for them. My scan and a few other things were going to get mentioned so we are now just waiting for them to come and see me with plans. It was said that my jejunostomy could be what is causing me pain too because the losses are acid and shouldn't be so it could need re-siting. This was also going to be discussed today. Lets hope they have some plans for me and what we can do about things.

I didn't sleep well last night, I was very restless again. I woke up at about half 6 but by 8 I was back to sleep for an hour. I'm very quiet today and quite spaced out. Not really up to much. I look very flushed too but my temperature is ok so it could be pain related. Daddy came to spend the day with me yesterday, we went for a walk around meadow hall but didn't stay there long. We then went over to TGI Fridays which is my favourite place.

Doctors have just come, there is nothing happening as of yet. Got to wait for another meeting which is 2 weeks away before we have an actual plan.