Tuesday 10 April 2007

A thoughtful day

Its been one of those days when you feel a little bit baffled and have your hand on your chin and ponder.

Firstly the nurse came to see Grace, did a cough swab and after much effort got her Sats up to 92. She hasn't had dnase for 5 days so thats the theory of it lowering lung function right out of the window, but also so is the lack of exercise the cause of low lung function because Grace has worn herself out this weekend running on the beach, playing cricket and going up and down lots of slides and hills at a theme park.

She has a bit of a wheeze on her right hand side so she has to continue on cipro and 10ml of prednisalone everyday until we return from holiday. She has been booked into clinic for a test dose of toby on 1 May so they have also decided its time for IV's again as she has been 'niggling' for some time, as Graces nurse described things.

I contacted the Dr's Surgery requesting cipro and took a copy of the letter regarding the tobramycin. They phoned me later to say that the Dr on duty was not a senior member so he couldn't authorise toby and also the cipro because its not on repeat. I explained that she always has it, but unfortunately a bulk order and two further prescriptions from the hospital meant that we hadn't ordered it from the surgery since Feb 06! They are going to book an appointment for me to see the Senior Dr in the morning for cipro which is fine but I have made a further appointment to discuss tobi because they have realised that it is £1400.00 per monthly dose. I knew it was expensive but blimey! They also thought that the cipro didn't remain on repeat because it was an antibiotic and you can't get those on repeat, never mind that she has augmentin, co-trimoxazole and azithromycin on the repeat, so I explained about the antibiotics and prophylactics, but I'm sure there will come a time when I have to repeat it all again, still they do their very best for us and I'm sure I will offload some of our many Easter eggs onto them.

They asked me what would happen if it wasn't prescribed and I told them I am unsure whether it would be prescribed by the hospital or whether we have to change surgery until we find a GP that will prescribe. Now I feel, should I ask the senior member to discuss it with Dr Simmonds?, and I also feel like saying don't describe it if you don't want to. It makes me feel really awful, so quite a lot for me to ponder. Also Grace has to remain on cipro whilst in Gran Canaria so the holiday for her to escape cf for a while has turned into a holiday to take cf with us unfortunately. Poor Looby Lou ................................

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