Friday, 23 December 2011

Just a quick note...

To say that we wish every one of you a very Merry Christmas and want to thank you for your continued support.

Sophie hasn't been too well over the last few weeks but I will update after Christmas.
Things seem to finally be turning a corner and I hope to post good news when we return.

Special thoughts to those stuck in hospital or poorly.

I hope every one has a healthy, happy Christmas!

Much love to you all from our family to yours.


Wednesday, 7 December 2011

A little worried.

Well this past week has been interesting with Soph.

I phoned the CF team as she was continuing to cough, cough, cough and spoke to one of the lovely CF nurses about my concerns.

After a debate consisting of us batting back and forth the options, weighing up the pros and cons of each we settled on giving ciprofloxacin another try. Yes you heard right, Cipro.

We decided that jumping straight back in with IVs was a bit soon and the plan was for me to get Sophie to do a sputum sample and get it straight to the hospital and to start the Cipro to cover the pseudo, just in case the IVs hadn't fully sorted it out.

So that is what we did, however when Sophie managed to produce a brilliant sample for me I was slightly alarmed to see her sputum was green. Not really dark but still green.

Sputum sample was delivered and Cipro was started, with the agreement that if by Monday, Soph had developed Cipro rage that we could switch to something else.

Come Monday morning, Sophie was coughing more and more and producing sputum like I've never seen. I couldn't quite decide if her grumpiness was Monday morning blues or Cipro rage starting.
Either way I phoned the team to see if her cultures were back. I wasn't comfortable as I knew something must be going on as her symptoms were extreme for her.

I eventually got a call back from her nurse who had the results.

The sample grew no Pseudomonas. I repeat, NO PSEUDOMONAS.

This is rare for Soph and is only the second time in over 2 years she hasn't cultured it. I know we'll be seeing it again soon but clearly the IVs have done their job and kicked its ass for now. Good times.

However, a new bug has been cultured.

Streptococcus pneumoniae.

I have to admit that I didn't know much about this one but after a chat and some research it appears it's common in children and usually results in strep throat. Sophie hasn't had a sore throat though.

It can cause a few issues if not treated including pneumonia. It is often resistant to a lot of antibiotics too.
Fortunately for Soph her strain is sensitive to clarithromycin so this is what we have started.

I've been searching for someone who has experience of it and want to know how you/your child was with it?

Reason I ask is Soph has had no temperature, no sore throat and hasn't been particularly run down, however she has been VERY productive, her sputum is still green and she's also becoming wheezy, which I feel is down to the sheer amount of sputum she is shifting causing inflammation in her airways. This bug is no longer in her upper airways and has now descended down into her lungs.

I'm just worried that it may stop being a typical childhood bug and develop into something more serious if it isn't starting to already.

Any experiences would be gratefully received.

In other news I've done my very first guest post and would love for you all to take a look. It's on Kathryn's blog, Crystal Jigsaw, which is a fabulous blog and I highly recommend you check it out. She's also a published author and generally lovely lady. Her daughter Amy is a wonderful young lady who has had her own trials in life living with autism. My blog post is about hidden disabilities, and I have to be honest, it made me cry writing it as it brought back some tough emotional memories that I had suppressed for a very long time.
Let me know what you think either here or over on Kathryn's blog at the end of the post if you can :)

My first guest post is only going to be available until next week, so please go and read it :)

As soon as I have some more news on Sophie I'll let you all know and if you can keep her in your thoughts and will her to kick this without any further intervention that would be wonderful.

I have to admit I'm a little concerned and worried but I'm trying to hide that at the moment...

Take care everyone and for Magda, I really haven't forgotten you but hope you understand my delay and I'll be in touch very soon.

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