Grace had clinic this morning. I thought that she was doing ok, if still breathless. Mark has said all week that she is rubbish and no better for her IV's, but as he had work commitments he couldn't come to clinic so he wouldn't be pressing the Dr's for answers (I always feel that they do things to show that they are appearing to do things for Marks benefit because he never lets up and accepts there is nothing else to try).


Today I thought I would say nothing and let them form their own opinions (the team). What a shock! Grace sats were 88 after more than 3 attempts different machines, washing sweaty hands etc. Her lung function was well down! fev 0.59 and fec 0.91 - I think 0.59 is the worst yet. Her breathing was very obvious to Dr S from across the room and how she struggled to get the better of it. Today they even took her blood pressure in clinic and they've never done that before.

So 12 days into IV's they've decided to proceed for another week and change the ceft to meropenum. Also a 3 week booster on the steroid front to try and sort out the joint pain which has become increasingly troublesome over the last 6 weeks or so. I spoke to them with regard to spiriva and Dr S looked it up on google but he said it looks as if its not liscenced for children, but would look into it more.

She is to be seen again in 4 weeks once the treatments have been completed and to see if she settles down again, and before, if we feel there is more deterioration, but generally he said she was very unwell again and was concerned.

If you had seen her at the BGT tour last night in Birmingham you would never have believed that the Dr's would say such things this morning. He did however, show extreme concern with regard to her stinky feet! I wonder if its a CF thing?

I will post picture from last night as soon as I have more time, off to do IV's now before piano lessons........................