Clinic this week!

It was nice to see Dr Weller, he attends our clinic about twice a year, and its very nice to get his input. We will be seeing him at BCH next month anyway, it should be the annual review but for Grace its the half yearly review as she is seen twice a year at Birmingham.

Firstly, her sats were 92 even though she is full of the cold, her chest sounded much the same as normal which is clearish with a bit of crackling on the left lower back. Her lung function was around 75% that would indicate that she has finally 'clicked' and now knows how to get the best from a lung function test. The thing that baffles me though is, with all the above info, her breathing is terrible, she can't walk up a flight of stairs at home without having to sit down and get her breath back and her heart is always racing, even when it was checked at rest. On Thursday whilst sitting down and had been for 2 hours, her heart was racing.

This was all obviously discussed at clinic and I have been pushing for some time for them to cut her prednisalone as her weight has gone up dramatically since her bronchoscopy, she now weighs 32.7 and is in age 10 clothes to accomodate her poor tummy which constantly bloated. So the extra weight could contribute to the breathlessness. The double dose of gastro was discussed but no indication of an xray, although I did say that she was having more abnormal stool problems than blockages presently.

All in all they were quite pleased with her clear chest and her sats being up, and they have decided to cut her prednisalone to 7.5g from 10 every other day to see if it will help with her weight with a view to reviewing it in Birmingham next month just to make sure she can cope with the lowered dose and also Dr Weller said he had had some experience of Graces 'funny episodes' being due to the steroids suppressing the adrenal gland or something like that which seems to fit 'the bill' perfectly.

Anyway she is still not back in school due to her stinky cold, but she will definitely be going back Monday and I can have a lie down for a few days. Well I'm off to get a makeover a la Grace now, ooh I can see the blue eyeshadow from here...........