Weekly Update – 21/03/2017

I am so sorry I am late with my weekly update, but am sure you will understand when I explain about the week we have had.

I will start off with C, last week started off not too bad, she had her first home tuition session with her tutor on Tuesday, and managed an hour with a couple of breaks.  We honestly thought things were going to get back to a level where she could start to look to the future taking very tiny steps.  How wrong was I, on Wednesday she woke up and looked awful and her jaw was horrible if I am honest.  On Thursday I rang her consultant to see if the referral to the Maxillofacial Department had gone any further and if they had heard anything.  Unfortunately, they had not and he was going to chase it up for me.  I managed to speak to my GP explaining how bad she was and he prescribed diazepam, as you can imagine we are not too happy about her taking this, but it is giving her some relief at least.

On Friday we got a phone call from the Consultants PA, who advised me that he had still not heard from the consultant, but he had chased the referral and it had been lost and been resent through and asked to be treated as urgent.

Fast forward the weekend, and C is even worse to the point where she can barely talk  as her jaw is moving around and you can see it locking and doing all sorts, and eating is hit and miss and at the stage she can not eat.  So you can imagine how I am feeling.  I ring the Consultants PA again, to be told he had not heard anything but the consultant had replied and said to advise not opening her mouth wide.  Well, yes I lost it, got very emotional and told him she can’t even talk let alone open her mouth.

I rang again today, yes I am going to be a nuisance until I can get something done, to be told there is nothing more can be done, it has to be seen by triage and then passed to the consultant and then a decision will be made on an appointment, so no idea how long I have to wait for her to sit and suffer.

So out of desperation I have contacted my local MP, my local counsellors and PALS, our GP can not do anything more and if we went to A&E it would be too traumatic to take C and have her sit there for hours to be told you are in the system and need to wait (yes been here before).

S has not been seen for ages now, but he does keep in contact via messenger, he was meant to have come here last Friday but cancelled, then this Friday but rang last night and said Saturday, so no idea when we will be seeing him.

On a positive note, on Saturday my husband was meeting up with friends, so I arranged a shopping trip with my friend for our holiday which is looming (and I am petrified to go away on now if C is not sorted).  As I have mentioned previously about my low carb diet, well it is obviously working as I tried on a linen dress in a smaller size and it fitted perfectly, so had to buy that and also a top for my holiday.  Unfortunately the shops have yet to get all their summer stuff in.

Unfortunately, it has not been the best week and I have spent the majority of it either in tears or in a determined rage, but that comes with the territory of being a parent.

I hope you have all had a much better week than we have?

 

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38 thoughts on “Weekly Update – 21/03/2017

  1. How infuriating to have to chase down the referral and hound the consultant trying to get an appointment when C is having so much trouble like this! I can imagine just how upset and outraged you are about this, having to watch her go through this and not being able to get anything sorted. I’m so sorry it was such a bad week, I hope things begin to look up soon x

    1. admin

      I am fuming, emotional, and every other emotion going, I am going to ring my GP tomorrow and ask for a telephone appointment and see if they will do an A&E referal for her, and hopefully if they actually see how bad she is they may action on treating her x

  2. Awww! I’m sorry you’ve had such a tough week. I hope things get easier for you as soon as possible <3

    1. admin

      Thank you, it has been tough x

  3. I can totally understand where you’re coming from. If I were in your position, I will also do the same thing to call them over and over until they sort this thing out. Hope everything will be better for you!

    1. admin

      I hope we can get it sorted soon, she is even worse today, if I knew I could take her to the hospital and sit in that department and refuse to move until she was treated or assessed, I would but it doesn’t work like that x

  4. How frustrating for you all and C that they can’t get her seen to quicker when she obviously needs it right now.

    1. admin

      The frustrating thing is the original referal was lost and she is a lot worse now than she was, and they do not seem to understand that I have a child who can hardly talk or eat in agony and discomfort along with her CFS symptoms. But as a Mum you never give up x

  5. I am so sorry to hear about your daughter, it’s so bad that the no one is able to get anything sorted for you, it’s not fair for you to just have to wait x

    1. admin

      It is unfair and she is getting worse and worse by the day, am trying another route now spoken to our GP

  6. Sorry to hear about C, it sounds like you’re having a tough time and a holiday is needed! x

    1. admin

      I am so torn about the holiday, I had a huge heart to heart with my Mum about this earlier, she has told me to go I need to recharge and she will sort anything out that needs to be sorted, but am hoping things will be moving before we go x

  7. I can imagine how worried you are, it is crazy that you still just are not getting anywhere and yet are being so proactive about trying x

    1. admin

      I am going out of my mind but facing those ever growing brick walls all the time x

  8. Oh fingers crossed you get somewhere soon and hope C is okay!!

    1. admin

      Thank you, it is getting to the stage I think she will be admitted to hospital before too long x

  9. Awww i’m sorry about your week. I will keep my fingers crossed for you. x

  10. I’m so sorry to hear you’ve all had such a tough week, how frustrating! Fingers crossed for a positive outcome soon x

  11. You really shouldn’t be having all this stress, having to chase after a referral. Really hope this week is better for you.

    1. admin

      I know it is a complete nightmare, my GP is stepping in and helping me now so hopefully not too long to wait now x

  12. Ohh I can feel your stress for what happened but I am still glad you were able to manage it. Salute to all parents like you. Hopefully everything would turn out fine.

    1. admin

      Thank you, hopefully things are getting sorted am making no more phone calls until Friday (fingers crossed)

  13. I am so sorry to read this. I hope she gets seen ASAP this is awful! I don’t know the story – but I can’t imagine how stressful and frustrating this is for all of you. Not to mention the poor child in all this. 🙁 Is she in pain at all during all this?

    1. admin

      Thank you, it is very stressful and heartbreaking yes she is in constant pain and discomfort and her jaw is moving and locking all the time. To me (especially in a child) this is urgent not having to wait

  14. Oh I am so sorry that you are being given the run-around by doctors and hospitals. I do hope that you get the jaw issue sorted out soon too. Sending you all big hugs xx

    1. admin

      Thank you, I am still waiting to hear something hopefully things will start moving soon x

  15. That must be so frustrating for you all, sending you all love x

    1. admin

      It is, I have to admit this has been the toughest week and the worst I have seen her, but you know us Mums we will carry on fighting x

  16. So sorry you’ve had a frustrating week 🙁 sounds like a bloomin nightmare x chin up Hun. I’ve been stuck in bed all week recovering from a collapsed lung 🙁

    1. admin

      It has been frustrating, sounds painful hope you are feeling better soon x

  17. Helen

    I’m so sorry to hear you have all had such an awful week. It must be heartbreaking to see C like that. I hope the GP manages to help sort something out quickly for her.

    1. admin

      Thank you, think progress was made today hopefully x

  18. So sorry to hear that you haven’t had the best week. Its awful when you’re either wanting to cry or scream, so frustrating xxx

    1. admin

      Thank you, and I did my crying and screaming yesterday x

  19. Dani

    I’m sorry you’ve had a rubbish week 🙁
    I’m glad you managed to fit into some new holiday clothes though – that is a great feeling!

    Dani x

    1. admin

      Thank you, has come to a climax now, getting into my new clothes was a great feeling x

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