Monday, 20 June 2011

Poorly bean.

Well so much for summer being round the corner is all I can say.

I dropped Soph at school only to receive a phone call to say that they wanted me to know that she had been coughing and retching but she was now fine. Her teacher informed me the other kids must think she is mad because she was really praising Soph for aiming her coughed up gunk into the bin and not the floor. Bless.

When I picked her up and she seemed fine in herself but over night she began coughing and by morning she was coughing, retching and clear gunk was flying all over the place.

Normally I would give her a couple of days to see how things are going to go but due to the fact she had no cold symptoms just a wet, barking, productive cough I was a bit out of my comfort zone to just leave it.

I don't like coughs that literally strike like lightening, there was no warning at all. Bam, and Soph had become a sputum fountain with a good aim!

After chatting to one of her CF nurses and a consult with her CF prof, orals have been called in. As I was on the phone, they could hear Sophie in the background it was that bad.

To the rescue...

So two weeks of orals and review after one week if no improvement. I'm guessing a pseudo exacerbation, however I'm hoping something viral may have triggered this otherwise IVs may be looming in the future if the drugs don't work fast.

I guess we can become too complacent during a long good spell. I forget sometimes just how quick infections develop and I just feel like telling CF to f**k off at the moment. It's supposed to be summer you know, the one time we can normally relax a bit.

I also turned 30 last week but wasn't going to let it overshadow the skydive as that was way more important :)
I was proper spoilt though, promise.

For anyone who missed my last post and may want to watch Ian's skydive click here to view it, let me know what you think!

Again thank you all so much for all of your support and well wishes. Total raised so far is over £1500 which is way more than we ever expected.

Take care all.

Monday, 13 June 2011

Don't look down! (updated with video link)

He did it and survived ;)

My wonderful husband Ian did his first tandem skydive in aid of the Cystic Fibrosis Trust today at 08.45 and had an absolute blast.

Ian just about ready to walk to the plane...

Certificate of confirmation from the skydive centre...

Certificate of confirmation and thanks from the CF Trust...

The money shot :D...

A huge THANK YOU to everyone who has already sponsored Ian, we have exceeded our target and we are so very grateful for every ones generosity. There is still time to donate on our Just Giving page for 3 weeks if anyone would still like to.

Link to our Just Giving page.

Full video of the skydive is now available to watch here! Enjoy :)

PS Look out for Ian trying to say hello to Sophie and also his instructor looking like he was wrestling him at one point :)

Roll on Skydive 2012 when Ian will take to the skies again along with me. Yes, next year as promised I am going to do it too!!

Take care all and thank you for all of your lovely good luck messages.


Friday, 10 June 2011

An update of sorts.

Thought I'd better give a quick update to you all :)

Firstly I must say a huge thank you for all of the messages related to my last blog post. I have decided to keep the blog public, for now at least so you're stuck with us for as long as you can bare it!

Sophs port flush went well, not as smooth as the previous but she was good after a few tears. On the bright side, sedation wont be needed again now so I'm super happy about that.
Sophie seems to be showing more interest in eating lately and is asking for more things to try than she ever has.

Ice cream is still her favourite though!

I know I'm naughty but I was curious so decided to dump her on our scales and she is now up to 16 kgs. Ours run the same as her clinic ones so the weight is always spot on so I'm happy with that too! Just hope she can keep on increasing between now and clinic.

She's getting her chub back since we upped her milk intake via her button.

It's one area we don't normally have to fret about but seeing her drop so much weight was very difficult and it was harder to accept because we had partly caused it with her tube wean. It's a terrible catch 22 but we seem to have found the right balance now and I'm happy with where we are at. We see her feeding psychologist and dietician in a few weeks so we shall see where we go from here.

At her port flush we managed to get Sophie to do a great cough swab. If you remember my last post, her previous culture had only a 'mixed growth' and no pseudo showing. I wasn't massively keen to rely on that result as she hadn't had a clear culture in nearly two years.

There are lots of schools of thought on Pseudomonas, some feel that once pseudo gets in, it'll never go and a few clear cultures do not mean it has gone. However there are others that say it is able to be eradicated and there is proof everywhere if you talk to others with CF who haven't grown it for years.

I am a realist though and am hoping the clear culture meant her pseudo numbers had decreased. Her usual growths are 'moderate' but when I eventually got the call from one of the CF nurses, her culture had grown Pseudomonas but the growth was only very very light.
This I AM pleased about as something is changing and Pseudo's numbers seem to be reducing at the moment. To reiterate, I really don't think we can clear it but I'm hopeful that we can maybe reduce the numbers further so it only shows from time to time and isn't too much of a troublesome visitor in Sophs lungs.

Only time will tell I guess.

This Sunday is the day Sophie's daddy will jump out of a plane. I cannot believe the skydive has come around this quickly but we have gone past our target of £1000 and we are beyond happy. We'd like to extend our thanks to all who have donated, tweeted, facebooked our link. Everyone has been so generous and we are so very grateful.

There is still time to donate or spread the word for us if you are able. The research and gene therapy in particular here in the UK are under threat due to financial issues and currently every penny counts now to help the future for people living with CF.

Click here to donate or share our link for us.

I will be in touch after the skydive on Sunday, wish Ian luck!! I hope the weather holds out!

Take care all and thank you all again.
Related Posts with Thumbnails