Just a very quick update on Amelie’s appointment on Tuesday – apologies for no pictures, life is very busy at the moment!!
So we managed to battle through the traffic on Tuesday and met up with Amelie’s lovely consultant to chat about “where we were” after the last big operation. The answer to all that was not really much further forward as we still haven’t achieved the main outcome of getting her dry and not needing nappies anymore.
We have run out of options now, nothing else is working so Amelie’s only hope is to have another operation to close the bladder neck. We have done a lot of soul searching over the summer about this, as once done, there is no going back and so carries increased risks of various complications. But then so do most things in life and Amelie (although sees the decision as very black and white) is adamant she wants to have it!
So with no other options (apart from staying the way she is which Amelie does NOT want) the Consultant has listed her for early January to have this next operation. Another 9 hours in theatre and long (ish) stay in Manchester again! Fingers crossed this time I can bring her home earlier and care for her here while her stomach and bowels decide to work again – they are notorious for “going on strike” after major surgery! I had all the training before so if she needs IV fluids at home, I will be able to do this and keep a close eye on her – fingers cross they allow it!
In the meantime we are going to make the most of being here this year for Christmas and make sure we get all the decorations up that we didn’t manage last year and cherish the time we have altogether as a family before January. It is such a wrench being apart – we are lucky that its only occasionally as I am acutely aware that other children spend so much more time in hospital than Amelie – nevertheless, it’s a tough time – we did it before so we can do it again. Fingers crossed Ronald McDonald house will be able to accommodate us to enable us to have some weekends together!
That’s it for now, thanks for checking in x