Wednesday 30 July 2014

Polly PICC line and the dreaded leg splints!

Yesterday was a day that brought some answers, although not particularly the ones I wanted to hear. 

Because of my Cortisol levels not being what they should, I am going to have to go on steroids for six weeks as a starter, then check my levels again and go from there. This is a big deal for me, steroids come with side affects and some of them can be pretty nasty. 

This meant I would need an IV line for six weeks so the original central line idea (that was planned for other medication until surgery) wasn't ideal as that lasts about two weeks. 

So, meet 'Polly' the PICC line! 


At the moment it is all bandaged up. But, a PICC line is a long, thin, flexible tube known as a catheter. It was put into one of the large veins of my right arm near the bend of my elbow. It was then threaded into my vein until the tip sat in a large vein just above my heart. I am able to go home with my PICC line when I am ready and it can be left in for a number of months. Much easier than all this prodding and poking  for cannulas every day! 

(Picture taken from Macmillan website) 

It took a bit longer than expected because it didn't quite go where we expected it it but it was soon rectified. 

The second new addition of the day where these....


Which are NOT comfortable and Infact quite painful but necessary. What these ridiculous moon bloods are for it to corrected the alignment of my feet, something called 'foot drop'. Foot drop is a muscular weakness or paralysis that makes it difficult to lift the front part of your foot and toes. 

Last night wasn't a very good night. The hectic say caused a very fed Chloe. But, I  bounced back like  always do! 

Thanks everyone! 

xxxx

Monday 28 July 2014

A long day to say the least.

Today has been a strange day, one that was supposed to bring many answers, but in fact created more questions.

I woke up this morning very early, feeling extremely nauseas and in incredible pain. I managed to go back to sleep for a while, sleep seems to be the only thing that gives me a break from it all. Mum woke me up as Dr. T came in to talk to us about the results from Saturday's tests. We hadn't appreciated that a lot of the results wont be here until in Friday, as they have to be sent to Manchester and Birmingham to be reported on. But, some of the tests were back, and the results were not what we would have liked them to be.

The first set of results showed that my cortisol levels were low, and needed to be tested more specifically. So I had a blood test at 9am, then a hormone injection, then another blood test at 9.30am. The test looks at the function of the pituitary gland in relation to the adrenal gland. When the results came back, it showed that my cortisol levels did increase after to hormone injection, but not to the point they would like it to. Dr. T therefore needs to speak to someone more specialist, about what to do and whether it needs intervention at some point. Another result showed there was inflammation somewhere in my body, which is to be further investigated.

Dr T has a habit of waking me up! He came back later in the day, this time to do yet another test! He had five minutes to do a blood test and urine sample and keep them in the dark. He then had to sprint to furthest possible point in the hospital, to deliver the samples within the five minutes. Mum was armed with a glass of cold water on his return- Well done Dr. T! This test was to check the cells breaking down in my blood- that's as much as I know.

Today I was supposed to be having a central line put in, but unfortunately this has been delayed until tomorrow. A central line is a long, hollow tube made from polyurethane. It will be placed into a large vein on the side of my neck so that fluid and various drugs can be given to me. This will give my veins a break as it is becoming near impossible to cannulate me, which could cause problems for my surgery.

I have also had yet another day where the physiotherapists have failed to see me, despite numerous prompts by different Doctors/Consultants.

So all in all it's been a long tiring day with not many answers.

Thanks everyone xxx


Saturday 26 July 2014

Please be okay!

Yesterday the on call Doctor appeared in my room. He began to that explain that some of the results from my big blood test the other day had some back, and one wasn't very good news.

The 'Cortisol' levels in my blood were very low to the point it would be dangerous just to leave them. But, as he did the test later on in the day it is not alway reliable. So, I had to have another test and I am stil awaiting the results. The second test wasn't as bad as the first one. The Doctor took a small amount of blood, then injected me with a hormone like drug and repeated the bloods half an hour later. 


The idea being that the hormone should make the pituitary glad produce cortisol more quickly and send it to my adrenal gland. If this doesn't happen, there is a big chance I will need to go on steroids for the rest of my life.

Please keep me in your thoughts and prayers, I feel like once I am stabilising one thing, another brick comes and hits me in the face.  There may be a chance that the test was just done at the wrong time of the day and that is what I am clinging on to.

Thanks everyone xxx

Friday 25 July 2014

Nothing like a 6.30 wake up...

Morning all, nothing like being sick and a cannula insertion to wake you up in the morning.

Last night I had a surprise visit from the pain consultant, who wasn't supposed to be coming until Monday. He was such a nice guy and came and had a chat with us for a long time, gaining a really thorough understanding of what has been going on.

But it wasn't the best news, he said unfortunately my pain is so complex that it is going to be very hard to treat. That at times it will have to be mind over matter because the pain will just be too severe for painkillers. He apologised and said he wished he could instantly do more. But also told me and the nurses to not be afraid of having more Morphine, if that is was gives a a break from the pain. He has doubled the strength of my BuTrans patch, but that takes time to work.



I burst into tears, I thought he was going to come with answers, but that wasn't the case. He is going to come back on Sunday/Monday to see how I am getting on. I think he wants to see if the higher dose patch helps before trying different things.

I am also really struggling with sickness, green acid from my stomach is all it is because I don't have any thing else in my stomach, but its horrible and wearing me down like everything else.

My cannula's are lasting about a day and that is just getting ridiculous. The lady who came and put the last one in told us we should talk to the Doctor about having a line put in, because it's not fair on me, especially when I am in so much pain already.

Yesterday I slept through the night and also slept six hours in the afternoon, the pain is just so exhausting. I am getting quite fed up of it all now. I try to stay brave because there really is no other option, but sometimes I just need a moment to say I am no okay and this is really hard!

Thanks everyone,

Chloe xxx

Uncertainties

This morning I have woken up feeling pretty awful, I am in pain and exhausted, even though I have slept for hours! I keep being sick for no apparent reason and It's TOO hot!

This Morning Dr. M came to see me, they are still somewhat baffled as to why I am being so sick and cannot allow me home because the medication I need I cannot have in the community. He spoke a bit about my Gastroparesis and Bowel Dysmotility and explained the pain management consultant isn't able to come and see me until Monday. It's all so frustrating!


Dr. M then came back and said he needed a chat with Mum and I. He is concerned that although the neurological team have seen me, he has asked him to come back and do some expensive blood tests and nerve/ muscle conduction tests.  I don't mind what they do to be honest, I just want to feel better and have my independence back! He says he "just has a feeling" and needs all avenues to be covered for peace of mind.

I'm desperately trying to keep my morphine to a minimum as I know it doesn't help my dysmotility but with the pain being so severe its difficult to know what takes priority.  It's an awful feeling not knowing and being in this situation.  Mum is still staying with me all the time to help with my anxiety, maybe next week we'll have some positive news?

I wont lie, I am very worried right now. So much seems to be going wrong in my body and it's hard to cope with when on top of it all you are completely exhausted. But, I have faith in Dr. M and his team, he has looked after me so thoroughly!

Love to all xxx

Thursday 24 July 2014

This isn't fun!

Hi all, 

Sorry for a lack of update yesterday, this happened...


I went outside! It absolutely exhausted me, to the point where I came in and slept for five hours. But still, it's a huge achievement. 

Yesterday brought more bad news. We got the results of my colon transit study back and they weren't fantastic. Two parts of my bowel have the same dysmotility as my stomach. This means I will have too be on very strong laxatives for the forseeable future whilst hoping and praying that I wont need further intervention. Last night I started being sick for some reason, which is slightly worrying as I dont have any reason to be sick



Today I am waiting to see the neuro rehab team and pain management constultant. That's about it! I desperately want to go home before my surgery but we need to make sure absolutely everything is in place so it doesnt end up as another failed discharge. 

Thanks everyone,
Chloe xxx

Monday 21 July 2014

Nothing like a cannula insertion to wake you up!

Well, now I am awake I may aswell update! 

Yesterday not a lot happened until late afternoon when the rheumatologist came back and confirmed the fibromyalgia/chronic fatigue. I just feel like the list is getting longer and longer. But I suppose at least if they know what is going on, the know how to treat it.

The doctor explained that my case is chronic and that i will need a lot of rehabilitation. All this news at once was a bit overwhelming, especially as I had just woken up! But, I am grateful that someone has given me an answer as to why I am in so much pain. Sometimes when your pain is unexplained, staff treat you differently because they cannot appreciate how much my body actually hurts, but when there is a label (i hate that word!) people begin to appreciate that the pain is very real and needs to be treated accordingly.


The pain management team should be coming to see me today to give me pain relief more suited to fibromyalgia, I am hoping and praying that this gives me some sort of break from the constant pain I am in, even if it is only for five minutes! 

I should hopefully get the results of my colon transit study tomorrw so will let you know when I know. I am honestly not sure what the outcome will be. I may also see the physiotherapists, as I did not see the yesterday. 

It is just a matter of stablising the pain, getting a care package in place etc... 

Thanks everyone :)

Chloe x



But things are supposed to happen on a Monday...Right?!

Well, It's now 2.00pm and I have seen no sign of any test results, the pain management team, the rheumatologist, the physios, the gastro team...not a glimpse! But you know what? That is something we have become completely used to. Medical teams definitely work to times that suit themselves!

I am really struggling to stay awake at the moment- sleeping both day and night.

Will update when I have more information xxx

Saturday 19 July 2014

Update! (yesterday was rubbish!)

Hi everyone!

Well, I didn't update yesterday because I was feeling more unwell that usual. I began sweating, feeling very sick and became very drowsy/lethargic to the point where the staff (including a doctor) were struggling to wake me up again. I kept having a really weird sensation of feeling like I was half in a dream but knew I was awake, I didn't like it one bit! In the end we decided I was probably a bit dehydrated because it's so hot in the little side rooms. I had a bit extra water flushed down my tube, and they took bloods (out of my foot) to be on the safe side.

Then at about midnight, after waiting all day for a new cannula, a love sister arrived to put one in. My veins hate me at the moment, even though I have plenty of 'new' veins in my feet, it still took 3 attempts to cannulate.

I'm still in a lot of pain in the lower half of my body, and will definitely ask to see the pain team tomorrow. I'm also feeling very nauseas which we believe is down to the fact that I am on a lot of pain relief already, and most of them can cause sickness.

I am just so exhausted all the time! I literally sleep most the day and all night, I feel awful because sometimes I have visitors and I sleep the whole time they are here! I manage to sleep in my chair a little while last night in my wheel chair :)

Friday 18 July 2014

What's wrong with my legs? We have the answer.

I have seen the neurologist who has reviewed my scan and luckily there is nothing structurally with my body.
But after a neurological examination he believes that because my pain has been so bad my legs have been "put to sleep" (in his words) by the nerves. This is why they only movement I have is wiggling my toes slightly. The nerves have effectively stopped working to preserve themselves. 
The only way this will be managed is with slow but steady physio therapy. And how long till I walk? That's sort of a 'how long is a piece of string' question. 
I'm upset. Yes I know it could be so much worse, but it certainly could be better. I wish they could just give me some sort of time span, or a magic pill and say "hey! this will make you walk again"
With my other problems and upcoming surgery it's going to make it even harder to get them moving again. I wont be able to bear the physio until they get my pain under control, which at the moment just isn't happening. 

But, through it all I remain strong, I have to.

Thanks everyone, Chloe xx 

Thursday 17 July 2014

Update from me...finally!


Mum took a picture of my medication this morning just to give you an insight into what I need to keep my body working, not even 100% working but the best we can so far! 


My BuTrans patch has gone up to 10mg instead of 5mg and will increase again if it isn't effective after a few days.  My gabapentin has also doubled and I am still on Oral morphine per required need every two ours. 


This morning we saw the Rheumatologist who is sending me for a spinal scan today and also referring me to a neurologist as my reflexes in my bottom half don't match the reflexes in my top half. 

He also said he believes I have fibromyalgia but wants to rule out other things first. 

I've just seen physio who are now using a banana board and handling harness and two people transfer me from my bed to the chair. They would also like me to have a hospital bed at home because I spend so much time in bed and it is easier to maneuver if needs be, it also has rails which help a lot! 

I'm still in such a lot of pain, feel very tired and incredibly nauseas. 

Please donate to our fund at: www.gofundme.com/fundingchloe 

At the moment i will have to use a commode in the lounge where I sleep and where the dining table is to go to the toilet, as we have no wheelchair access to a bathroom. This is totally unsuitable and an upsetting for me because I am 19, not 90...I feel like I am losing all my dignity. But it is also unfair on the rest of the family, it is not hygienic for them to eat where I use the toilet, so they will have to eat on there laps which isn't fair, especially on Joshua my brother, who is only 11. 

Thank you so much for your ongoing support through this difficult time, 

Lots of love, 
Chloe
xxxx

Tuesday 15 July 2014

Another note from Mum x



A smile for a photograph can be very deceiving, hiding the pain, frustration and heartache.

The utter disbelief that this is actually happening to my darling daughter who has battled through so much over the last 5 years, beaten so much, started a new chapter only to be struck by this!!!!

I've spent day and night at the hospital watching the deterioration in front of me, the constant pain, turning my chloe every half an hour to stop the joints from hurting quite so much.  We've shared tears, a few smiles many frustrating moments when I just feel so helpless. I feel like walking through the door without a backwards glance..... Heartless you must be thinking, but you get to the point where you just feel your useless, what's the point of being there you can't take away the pain, make it all better....

So today, a cannula was finally put in place by dr Rik, physio have tortured! then this afternoon chloe has a specialist joint scan, the doctors should be doing a review about 2.30.   Other than that, there is no change, nothing positive to report.  The sad truth that Chloe has to 'grin and bare' this as part of her everyday struggle.

Please help if you can or haven't already done so, we desperately need to raise more funds to help chloe come home to what she needs, if you are able to the link is: gofundme.com/fundingchloe

Hopefully chloe will find the strength to update her blog soon, but in the meantime, chloe says Hi, to all her followers and she'll be in touch soon.

God bless you Chloe, there must be an answer soon.... We will notice up.

Mum xxxx (Suzé)
  


 

Friday 11 July 2014

Update from Mummy!

Friday lunchtime, another difficult morning, Chloe still in immense pain with the annoying addition of hiccups!!!

More urgently her cannula has once again blown whilst her anti sickness was administered, from a mums point of view it's terribly difficult and heart wrenching to see your daughter suffering and going through so much pain!!!


The OT and physio have finally been gosh we've only waited 11 weeks!!! The lack of communication is appalling why is it you constantly have to fight and stamp your feet to get anything done.

Chloe is so grateful for your support, messages and ongoing well wishes.  Unfortunately she is too poorly to update you today that why it's me.

I've told Chloe that everyday we will stand together and fall together but with Chloe's strength of faith, her positive thinking and will to get better we will get there.... We're just a little bit unsure of when.

At least the sun is shining....
God bless you all

Suze xx

Wednesday 9 July 2014

Cannula change wasn't a pleasant experience.....

Well, I am struggling to update or talk to anyone because of the fact that my  body is filled with pain relief and my mind is totally worn out. I can make myself look reasonably okay with pretty filters and editing like this.... 

When the reality is Infact this....

I am so spaced out, because of the pain, and then I stop feeling spaced out when I have pain killers but they create a new sensation in my body that is just as weird!

I'm falling asleep whilst typing this because I'm just so weak from the pain. 

The rhuematologist came today and is going to test me for different things. I will try and say more about that before I have morphine tomorrow, or get my mum to post on here! 

It took 17 attempts to cannulate me today by four different people. This is the outcome: 

My veins are just not happy! 

Tomorrow I have no idea what is happening, I can't actually recall much of what anyone has told me today.

Thanks all,

Chloe xxxx

Tuesday 8 July 2014

Back in hospital



Pain was out of control and possible chest infection. Mum called the doctor who said to come back to hospital and so that is where I am! 

Monday 7 July 2014

Morphine muddled mind!

This is the face of my reality right now. Snuggled up surrounded by pillows as padding to try and ease the pain. I get up in the morning with great intentions for the day. But, by the time I am on the way back from the hospital I am in too much pain to function, I am exhausted, I feel sick, I fall asleep.

I stayed in the car fast asleep until gone 1.30 pm. I am back on morphine- Doctors advice. I just can't cope with the constant burning in my joints. The pain is hard to describe- it's like growing pains x 1000000000.

I wish this would all go away, I will admit, it's starting to wear thin. I don't think the morphine helps that though, when my mind is so cloudy it's hard to think straight.

I had a nice time at the river festival yesterday afternoon! It's just a shame I have to pay for it today. We aren't at the hospital tomorrow, but back Wednesday, at least we wont have to rush so much!

My eyes are closing as I type, so I better go...

Thanks all!

Chloe xxxx

Friday 4 July 2014

It's tough, I'm not going to lie.


Days like today, when I'm totally exhausted- end up going to the hospital in my pyjamas, feel like bursting into tears at the slightest thing, feel weak, lethargic but angry at the world, they are really hard work. Not just for me but everyone around me. 

I am in a lot of pain in my legs and hips, Infact I have shed tears over it. I feel like my joints are burning and my calves are being stretched beyond a tolerable level. 

I feel sick, my abdomen hurts, I don't have the energy to do anything becUse my feed gives me enough calories to just about survive. This is tough. 

My family are exhausted, we have no time for anything but sorting me out, which is hard. My poor Mum physically can't take the strain if how demanding looking after me right now is. If I try and walk one day, it has a knock on effect in the pain and exhaustion levels of the next. I have people (that don't understand) telling me that I 'need to keep walking" but it is simply NOT that easy. When I walk I feel like I'm going to pass out, my legs cramp up and give way, it affects the rest of my day. 

I am too exhausted to drive round to Nanny's for a shower so sorry world- it will just have to wait. 

I think thank is enough moaning for one day. I just desperately need some suitable space so I don't rely on piggy backs that hurt my hips even more. So I don't have to travel to another house to have a shower. 

It's all so very hard. 

Thursday 3 July 2014

Exhausted is a HUGE understatement.

Hi all,

Sorry for being so absent, we are desperately trying to settle into a routine at home and that is not easy in the slightest. We have many factors to content with, the biggest being having to get to the hospital every morning...4 days down- We don't know how many to go! At least tomorrow, Monday and possibly longer but we shall see.

Another is that I am just. so. tired. I could sleep pretty much day and night if I was given the chance. My feed is 1500 calories daily, and I am used to living on more than that. My weight is going to have to be closely monitored because I am now moving around more than I was (okay not much) but I am still using more energy than I was lying in hospital in bed (getting in and out the car, trying to use my legs, sitting up more than lying down. It all equates to energy usage) and I was still losing weight quite often there.

I need a lot of help, which sometimes I feel guilty for as the whole house is running around after me. I hope that as we get used to things there will be a lot more I can do for myself, and even if I can't things will be done more efficiently and wont take as long so that it doesn't feel constantly like everything is about me. I am also a very stubborn independent person and that doesn't fit in with needing constant support! So it's all a matter of adjusting.

I went to Nanny's yesterday evening for a shower which is not ideal! We are lucky that nanny has a wet room downstairs. But getting me in the car, then out the car, getting me into Nanny's house, then have a shower (By this time I am irritable and beyond exhausted- and Mum is exhausted too) THEN get me back in the car, and out the car and back into our house. It just makes life harder than it needs to be.

Lastly, I am worrying about school work. My family and I are all paying for me to do an Oxford open university course and I am stressing that I am just not going to get it done. I don't have the energy to do it right now, and time is ticking. Do I stop now or do I try and cram all the work after my surgery? Advice on that one would be really helpful.

Thanks everyone,

Chloe xxx