Monday, 30 July 2012

The bitch is back..

Well we've had an interesting time since Sophie broke up from school.

Started with the usual fun that school holidays typically bring but then CF clinic happened and it all went a little off schedule.
Unfortunately Soph re-grew MRSA on a routine culture and this time round we weren't at all surprised. In fact I actually expected it after the huge plug she shifted on holiday.

It was clear that the big bung was holding a lot of nasty gunk prisoner in her airways, and once it had been popped out, an onslaught of nastiness was sure to follow.

And it did.

I guess in hindsight the signs were there. She was less productive, she was having small streaky episodes of blood and once the big bung was out, her sputum was very very colourful. So colourful that an artist could have produced a masterpiece with her offerings.

Unlike last time, she is well. So well that the only sign was the actual culture once the amazing technicolour sputum fountain had subsided.

So we have just completed round 2 of operation kick this nasty bitch out.

Sophie was a trooper and other than more production and all of her bodily fluids turning orange again, she has had none of the nasty side effects encountered on round 1.

I'm in a neutral stance regarding eradication now. Obviously we want this bug gone. Not one to be too greedy as we do have to do battle regularly with MR P (pseudomonas) but I'm realistic and knew first time round that although we had appeared to kick it out in spectacular style, the following 6-12 months would show the true picture and they have...

The bitch is back, but is this a short stay or is she going to co-habit with Mr P long term?

Again time will tell. We've done the full regime of 2 oral antibiotics plus the topical treatments and today we have delivered her first set of samples to be cultured.

The one positive is that the MRSA is sensitive to every antibiotic except the penicillins (obviously) so it's quite a weak little demon currently, hopefully just a fossil left behind when the plug formed. One can only hope that right?

I will keep you posted on the results as we get them.

We had a meeting with Sophs CF team to discuss a plan in general for Soph and it has been decided that she is to have a bronchoscopy ASAP to really get a true picture of the house party in her lungs. This is happening on the 10th August so not long. She is also going to have a tune up straight after so we are gearing up to 2 weeks of home IVs.
This time round we have opted for pre-mixed drugs so that should make life a whole lot easier!

Sophie is also going to have an ineb!

Shes super excited, which leaves me torn on how I feel. Fantastic that she is embracing her treatments but a little sad that my 5 year old daughter not only knows what a nebuliser is, but is excited about an upgrade in model!!

I'm trying to veer towards the fantastic stance, as nothing is standard in our lives :)

We now have the promixin and the rep is delivering the ineb this Wednesday. This nebuliser should make things easier for Soph and hopefully make things quicker. Also as it is a breathe control neb, Sophie will get 100% of the drug and no wastage.

In other news we have bought Sophie a new bike which she loves and is giving her puffers a great workout.

Best picture I can get as Sophie will not stay still once she gets on it :)

Sophie is also still drinking 1 whole paediasure every single day so we have permanently cut her tube feeds down to 3 per day now, super exciting!!!!!!!

And finally, meet Sophies new addition to her teddy collection. This is her sock monkey Sookie!!

Now this isn't just any sock monkey this a sock monkey for CF and proceeds go to the CF trust. The story behind the website is quite powerful so please go and visit if you can.

And the great thing is they ship worldwide!

So if anyone would like to purchase one please visit their website

That's all the updating I have for now as we are trying to cram in as much fun before Sophie's IVs start.

Take care everyone
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