Monday 24 September 2007

I'm back

How terrible is it that you can't be without your computer these days? I felt like I had had a limb cut off. £190 and a new power pack later, I am back.

I have tried to get to the gym at least twice a week, but it has proved very difficult with builders being here, they seem to rope you into something most days, I've just been into to the kitchen to get some cereal and ended up holding a tape measure for about 10 minutes.

On the Grace front, after we had the meeting with Dr S he had decided that an extensive letter was to be sent to BCH ahead of our appointment on Weds 19 Sept. We had prepared ourselves for lots of discussion and thoughts on what was said in the letter.

We couldn't have been more wrong, firstly we met a Dr who said he was essentially Dr W's successor (his words). I had never heard him mentioned before and we thought as the letter had been written to Dr C that she would be there to advise us on that day.

Unfortunately I can only gather that the Dr attending had only had a few minutes to briefly peruse over the letter before we went in to see him.

He asked a few questions with regard to what Graces meds were and why she was on them. We mentioned her symptoms of lethargy and breathlessness. He inquired as to her night time sats and her blood sugars. We told him that the sats weren't an issue at night because her problems with tiredness were afternoon and evening related, but he wanted to test them during the night just the same.

With regard to blood sugars, we told him that the results to that test were normal. He then discussed aspergillus and I told him that the results for that were normal but the results for allergy were high even though Grace showed no symptoms. He has therefore decided to test for aspergillus again and also thyroid as he felt it might not be a cf related problem.

He then asked when she had her last annual bloods done, I asked what he meant and he said in an agitated voice " you know, annual, annually" (well actually I know what annual means, I wanted to know what he meant as she never actually has annual bloods taken or an annual appointment and generally because she had been so unwell, they had taken bloods and tested for everything they could think of at Coventry including Cepacia and TB just to rule those out too, as it said in the letter).

He then moved on to ranitadine, why was she on this? because of re-occurring tummy pain, as advised by the dietitian. Did she have reflux? She has had some reflux but nothing major, normally before she becomes unwell and is in need of IV's, and nothing since the ranitidine. He then read through his notes and said I will send her to xray and we will take all of her bloods and we will arrange for a reflux text because the ranitidine could just be suppressing the acid and going into her chest and causing constant reoccurring infection therefore causing the breathing difficulty.

Us - " What even though Dr S from Coventry says that her lung disease is progressing and a high rate even though it has been aggressively treated and still they are at a loss as to what to do?" Therefore don't you think that they would have done the reflux tests if they felt that was the issue?

His reply was with regard to the suppressing of acid explained above and that he felt that Grace had good weight gain (she always has and always been on permanent steroids) so then you would normally look to the parents not doing the treatments as they should........... well that remark speaks for itself....

The CF nurse, who is lovely and very helpful and we have known for nearly 6 years now, jumped straight in with the reply "this is Graces parents we are talking about and Grace would never be allowed to get away with missing treatments". This is true, we have never missed a single treatment to this day.

From there we went to xray, I told Mark that we should just do the blood tests and xray and then go, but we also had to go back to a lung function test, where the CF nurse spoke to us out of concern that we were not happy. We had to go back for the concluding meeting with the Dr so that he could look at the xray. He felt that it was no different from the one at the last meeting, which was almost a year ago as other meetings had been postponed due to Graces illness at that time.

For some reason though, he suddenly then decided to say that he would bring everything in the letter up with the Dr's at a meeting on Tuesday and that he was very concerned about Grace and that they would leave no avenue without investigation. Well now I am baffled, why if the xrays look no different to last year and no results have yet come back from the bloods which were only taken 15 mins before, did he suddenly sit up and show concern?

I am not looking for immediate answers, but the opportunity to discuss our thoughts and feelings and get some of feed back from someone who had actually known what was in the letter would have been helpful. I felt like an idiot, an idiot that had travelled all the way from Coventry and carrying a scrutinised 6 page letter so that I could ask every question I wanted to and nothing in the letter got mentioned, not one single thing.

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