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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