Another few days since the last blog, and despite rumours in this weeks papers it isn't because Ryan Giggs took an injunction out against us...
As is so often the case everything here ground to a halt over the weekend. We were all prepared for jovie to have a tracheostomy early this week. But as is also so often the case things changed without notice yesterday. Turns out the respiratory doctors want a diagnosis before they agree to the operation. Join the bloody club guys.
In "surprising" news, the results from Jovies muscle dna tests (the ones lost in bristol and recently resent) have come back negative.
This is the dosorder first put forward weeks and weeks ago by a visitiing neurologist in Worcester. A disorder we have worried about and talked about yet never truly believed jovie could have. Yet a disorder the neuros here have almost blindly been concentrating on since we got here.
Anyway, its very good news as it all but certainly means she doesn't have the nasty disorder the neurologists have been certain she has got. This does mean that all the treatment they've given her has done is cause nappy rash, a high heart rate and one fit. Well, like with buses you wait an age for results and they all come at once. On Thursday (God knows how they can know to the exact day) the results for the ondine disorder test should be back with us too.
This explains the newest change, because if jovie DOESN'T have it then a trachy is a must for long term ventilation, and we will literally be back to square one in terms of finding out what's wrong. If she does have the disorder then she will need ventilation only while asleep, which may still be with a trachy but could be something else!! Frustrating, annoying, bloody scary, but at least its something.
As far as how jovie is doing, now she is more active and aware while awake, her breathing drops do seem to be coming less and only when she sleeps, which could support the ondines theory. Her weight is good, so good in fact the little chubber might be having her milk reduced now. She is still causing the nurses grief by pulling out her tubes and wires every time they drop their guard. Lots of new presents have arrived making her little bed space look a little like a zoo! While she has enjoyed a number of visitors over the last week.
Getting back into the world of communication, social networks, replying to most msgs and generally talking to other people has helped me and Lorn find some sense of normality. Sorry again to anyone who I haven't replied to, I'm trying to get round to you all!
Id also like to take the chance to say another big thank you from all three of us to GDL Athletic who are donating money from their annual charity match to the Ronald McDonald House Charity who are doing such a great job here housing all us worried sick parents. While I'm at it, thanks again to everyone for reading and the continued comments about this blog and the kind wishes for us all too.
Will update again on Thursday unless anything exciting happens tomorrow, although it will probably just be to say the results haven't arrived yet!
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