Life is good...

When everything is going so well, I have a lot less to say.

Do I hear hurrahs all round?

The boy is well, the girls are fab, and we're going on a dream holiday, quite literally a wish come true (courtesy of the Starlight charity - which I will post about another time). Even at good times we feel like we're living against the clock.... One emergency admission and the trip is off (they can't insure us).... Finger crossed for us please. Have a great day.

CF myths

There are many reasons why I started this blog. Most importantly I guess, I find writing things down clears them from my head. Or at least tidies them up. I also want to share how we are all doing with family and friends. It's really hard keeping up with who I have told what to, and when we are in hospital, or awaiting test results, this could be a central place to update all, which would be kinda handy. Most of the time talking helps. Sometimes it doesn't. After a day in hospital it's the last thing I want to do (a few days later I am back to yakking away to anyone who will listen!). Then there is CF awareness and fundraising, which mean a huge amount to us. We are super optimistic about the future, and really think research happening now is going to make a huge difference to our future. We are already proud recipients of so many advances in CF care, just in the last few years. And awareness is hugely important too. If there was more understanding about CF, and how it affects him, then his life would be so much easier in future. So in future blogs I will be dispelling a few CF myths, and confirming some CF truths.

Waiting

We spend a lot of our time waiting for test results. It used to be much harder. Now it's not quite so hard. I guess the more you pack into your life (we are now a family of five, and we really pack it in!) the less time you have to worry. Usually it's results from the lab - if his cough seems worse, he coughs up into a pot, or on a swab, and we send that into the lab. It's as easy as dropping it off at our GP round the corner, which is great. 4 or 5 days later, we get the results from the lab. They are not slow, they need to grow the bugs in the sample to identify them, and that takes up to a week. Then, if we need to, we swap his antibiotic to one that is sensitive to that particular bug. We do this maybe once a month, more often when unwell. When really bad, we send in samples every other day - one sample might be negative, the next positive. Whilst you might hope for a negative result, if he's coughing, that tells us nothing. It doesn't mean he's not actually growing anything, just that the sputum in that pot didn't contain the infected sputum. A positive result means we can treat the infection with the correct medication, which is what we want. Stop it in it's tracks. A big F you to the bugs. So we spend a lot of time waiting for results.

This week has been about waiting for the CT results. Today I had an email from our (amazing) CF specialist nurse 'CT looks good, we'll chat it over at our X-ray meeting and I'll get one of the doctors to call you back'. Big relief. Big glass of vodka for Mum. Maybe I had been worrying about that one a little more than I thought.

Olly and Nush

Today my daughter asked to watch the Olly and Nush cartoon again. She is 5 and beginning to understand a little more about CF. After all, it affects her hugely too. It reminded me how sweet it is (I can't take much credit, but was part of the focus group who brainstormed ideas for the film, and through a lovely supplier at my work, got the DVDs manufactured at no cost to the charity which was great). For anyone wanting a small introduction to CF, or trying to explain it to a child, it's worth a watch.... Click Here . 

CF sucks

Today he informed me that CF sucks.

This is not his standard response. He is actually pretty easy going, and very compliant with his meds, nebs and physio. But occasionally he says it sucks. He has to work so hard to stay this well, and there is still a decline in his lung function every year. Why? Maybe the results of the CT will tell us. In the meantime, yes, CF is not really a walk in the park. But on the otherhand being regulars at the hospital is a very humbling experience - there are always people worse off. And whilst he spends sometime each day doing stuff just to stay as well as he is right now, it's nothing compared to what he had a few years ago even, with cumbersome old Pari junior nebs and percussion physio, and compare that to years before, where people with CF slept in mist tents, had to exclude fat from their diets as they didn't have the enzymes we do now, and had their IVs on constant drips in hospital, rather than pushing them through a port in the comfort of your own home.... Of course he doesn't know or understand all that yet. So yes, CF does suck, but it could suck a lot more! 

I really do think we are the lucky ones. 

The doughnut scan

This week he had his first CT scan. I'm not sure if this is good, that he reached 9 years old before needing one, or that it's a bad sign that he needs this kind of investigation so soon. It was certainly less intrusive than the Broncoscopy (camera down into the lungs). He seems so grown up, our little pre-teen, but on the other hand so young. I guess all parents say that. Anyway, he was so good for his cannula, his first with just cold spray instead of magic cream (which always makes him red and itchy anyway). And he loved the scan itself. The only problem being that we were alone in the room, whilst the doctor folk were all in the other room behind a window, only speaking to us through the speaker. The only thing he needed to do was to lie still while the contrast dye pumped in and they scanned, but we just kept giggling. Proper shoulder jolting giggling. To be fair, he was better than me. Can you imagine being on a table and zipping in and out of a giant whirring doughnut and not laughing? Or maybe that's just us. We like to laugh.

We just have to wait for the results now. If they call and say they want us to come in, we'll know it's not great news.