I promised an update on our lovely boy (thank you for all the comments on FB and email by the way). If I am raising awareness in any small way it is worth it and my pleasure.
He has been having a great year on the whole. His declining lung function (LF is the main measurement of wellness in CF) is hopefully more to do with technique in the test than infection and inflammation - that is the hope anyway, and as always he is being closely monitored. His LF at clinic today was stable, which is to say it was not as high as we would like, but no worse than it has been all year. His height and weight were both great (they really like him to have a little extra weight on him as it is known to help hugely). He was a VERY small and skinny baby and toddler, to see him slightly above average now is just amazing.
Our fantastic CF team at Addenbrookes always talk to us in terms of aggressive, timely treatment. The hope is to preserve his lung health for as long as possible, and amongst many other drugs, he is always on two or three different antibiotics, and we add more as soon as his cough worsens, or the lab grow something from his swabs which is not sensitive to his prophylactic abs. At the moment he is having no extra treatment, and we hope that this will last the summer - there are always more bugs flying around in winter.
He has problems with tummy aches, especially in the mornings, and his dietician is great about helping us suss out why this is. It may be too little Creon (we work out how much he needs on a rough rule of 1 to every 3g of fat, which generally works, but it is not easy to work out, especially with homemade food, so it is sometimes a little trial and error), or it may be slower, stickier guts, which cause him to have blockages, which again, he takes a lot of medication for. But he's had a good month tummywise too.
There is usually some niggling issue bubbling away in the background... He is having some extra physiotherapy input right now, but that is all going well. I queried some of his latest blood results, and I've learnt today that they have known for some time that he has lowered serum levels which indicate a poor immune response. There is not much we can do about this but it will affect how they treat him should he have more chest infections (by which I assume they mean more aggressively). There is ALWAYS something to worry about..... but I guess that is a Mums job.
Thanks for asking, and I'll try and update you every now and again on how he is. Have a great day x
