BCH update

Yesterday was Graces appointment at the above.

Firstly, we normally make a day of it and do the Bulllring and go to Wagamamas for lunch (Graces favourite). So anyone that knows Grace and knows how she has been doing lately will know that we needed to take the wheelchair (Dave) as she would not be able to manage a day out like that otherwise.

So when you are told by the physio that "we would normally like to advocate as much exercise as possible and using a wheelchair doesn't really help a child with cf" it makes you feel a little patronised to say the least. I then had to explain that we had been advised to stop extra activities presently as Grace was feeling the strain, and give her a big big rest. We also understand the implications of using a wheelchair and feel that out own team wouldn't have advised us to apply for it if they didn't think it was necessary at the time.

I went on to explain to Dr W that we use it prophylactically (if that's how its spelt) and that we knew that carrying Grace around Birmingham at 32.8k for the day was not an option. So does that mean she shouldn't have days out if she can't walk that far?

This information has led to an exercise tolerance test being taken. I informed them that Grace would push herself to the limit where exercise is concerned and doesn't know when to stop, but for the next few days it just takes her off her feet and she can do virtually nothing.

Here sats were 92 (excellent for Grace) and her chest was sounding clearer than 1 month ago, her lung function was marginally down on last month but not massively. They also gave her a big dose of salbutamol and re-tested her lung function, there was very little change, so they decided against serevent. Was very funny though, Grace really peculiar for about half an hour afterwards and couldn't stop shaking.

So generally she isn't bad, but her breathing difficulties are much more visible and Dr W remarked on it only minutes after Grace entered the room. She has been taking zirtek on and off for a few days because we thought she has hay fever, but as she is improving this week, I think that it may have been just a nasty bug that she had picked up. We actually decided to leave off the zirtek because we didn't want that to be used as a reason for her weary episodes (it would be easy to say that zirtek could make you drowsy).

So in my opinion, Grace appears to be quite well, but her heart races constantly to keep up with her breathlessness, she gets exhausted very easily even though we work tirelessly to promote exercise,(until this last week of course)she has a reasonably clear chest,but for some reason cannot manage to keep her breathing under control.

Dr W decided to keep the prednisalone at 7.5g per alternate days and is looking to bringing it down to 5g per alternate days in the near future. Also he was happy for Grace not to start IV's until 5 June as planned rather than bringing it forward because she had been unwell (that was pleasing for me) long term he is looking to extend her planned IV's to 4 monthlies instead of 3. She has now started clarythromycin and hopefully will be able to tolerate it. The hypertonic has been scrapped because 3 months down the line, we have noticed no difference for using it and her regime is such, that we were struggling to fit it all in, so at least she gets a little more time to herself.

So hopefully this little switch round will help her on the road to recovery....and the slight blip from the physio from the Ministry for the bl**din obvious hasn't 'p'd me off too much............. but generally, I haven't got a clue what else to do, why can she not get her breath if she is well? The lowered dose of steroids hasn't shown any weight loss to date, but quite a considerable bit of height has been gained, so I am looking forward to seeing a balance there in the future that may help with her breathing, but I don't really think that her weight is behind her breathing difficulties.

Long old blog today............so I'll go now before I start posing myself more questions, apart from mentioning that he BCH team didn't feel that we needed to be contacting Brompton just at the present time.