As you will know from my previous blog we went to GOSH last week to see the Neuromuscular team. We signed a lot of research papers and we were given a lot of counselling papers. It really was as much of a SWAN life as you could possibly get. A lot of prodding, a lot of questions and yet no answers.
At our Neurology appointment back in June we were told they wanted us to have an MRI of the base of the brain and the top of the spine but they needed to make sure the BBG was safe to be sedated to have an MRI, and that we won’t be seen by the MRI department until end of September/October. So it was a bit of a shock when I had a phone call today from them.
We have been asked to come at 11.30am on THURSDAY as they want to do BBGs MRI, after the MRI she will then get seen by a specialist team of consultants and doctors from various places. We will then stay over night and see the Neurology team and have another EMG. I hate the EMG’s it is horrible as a mother holding your child while a doctor puts needles into her muscles and sends a little shock wave into her tiny body. I know that it is to see if she has a myopathy but it is still horrible. The last time she had one it showed up that she did have a myopathy and that it showed that it could be something called Congential Myasthenia Gravis, however when they re did the EMG and put the needle between the eye and temple it came back negative for this. Thankfully it also came up negative to the condition they thought she had and why they got her into GOSH so quickly.
After this we then stay in hospital over night and see the Neuromuscular team and the specialist team again. BBG will also have a few other scans and tests on the Thursday and Friday too.
I am freaking out, I know I shouldn’t be but I have no idea who this specialist team are, I have no idea why all of a sudden they want my daughter in next week. In my head I am thinking, it could just be because a space has opened up but my heart is beating an extra beat per minute wondering but why?
So far up in GOSH we have had a couple of appointments with months of notice and this is the 3rd appointment where they have called up and wanted us in asap. The first time was because BBG was showing signs of a condition where the life expectancy was less then a year old, the second time was because BBG’s throat closed up and now this time. It’s human nature looking back at the past and thinking, ‘what have they seen?’.
It is the first time BBG is having to stay in hospital and she hates staying in different places.
I guess I needed to write this blog to get it off my chest, to rationalise that there is probably nothing wrong but they had a cancellation.
I am hoping other people have experienced times like this where they have suddenly had to come in for 3 days worth of testing and they can give me a positive outcome on reading this.
I shall keep you guys updated! I will be a nervous wreck this week so I will try and stay positive. Sorry for the ramblings but sometimes a good old ramble shows I am not super mum, I don’t always keep my composure and I am not always strong as at this precise moment I feel as week as a bubble.