Results from hospital meeting

Dropped Grace off at Nannas house this morning at 9.30 and then made our way to the hospital for the meeting with Dr S and also Graces Community Nurse attending.

Generally things didn't sound good, but nothing more than we had expected to hear. The Dr had drawn up a list of Graces visits to clinic since diagnosis and compared this history up to date.

It would seem that since summer 2005 Grace has gradually worsened and definitely in the last 17 months things had taken quite a bad turn. He has eliminated most things such as aspergillus and cepacia, even TB! but decided that it is more than likely a very aggressive strain of pseudomonas aureginosa, which along with Graces make up, was something that she couldn't fight too well. He had made a list of her antibodies results since diagnosis and they read at 6 in March 2002 and currently at 29, going from 17 at the last visit to clinic and after having aggressive treatment,had gotten worse.

We thought that maybe he might suggest a bronchoscopy, but has opted for a CT scan first. Also my thoughts were that the down fall had coincided with the termination of azithromycin when she developed an allergy to it. It seemed to perk her up again with good results when she was on it previous to that time.

With that in mind they are going to try to re-introduce azithro and also start her on hypertonic saline whilst also giving the tobi nebs a few more months to get things moving.

Grace also has an appointment at BCH mid September, so Dr S is going to write to them ahead of our visit for their input as he feels that he should give all these things time to see if the damage is irreversible or irreparable, either way he said that he is very worried and said that he doesn't want to lie and say not to go away and not worry because they do have 'concerns'.

He mentioned how much faster her breathing had become of late and her lung function was getting lower and lower with each visit and he felt that it wasn't due to lack of technique. I mentioned at that time that sometimes we have to tell Grace to sit down and calm down as her heart is racing whilst she is trying to regain her breath, sometimes she just won't give in. This brought up the subject of overnight oxygen, to which he was happy not to give it to her just yet as her lethargic time was in the afternoons as opposed to the mornings, and he was happy for her to keep running around like a loony whilst she felt she was able. So generally, it was no more than we new already ourselves, and we are all hoping that it is just a sticky patch that will be turned around.

We truly are hoping that it will be turned around, I don't know what to think next if she just continues to plummet at such a rate. They asked us if we wanted to ask any more questions and to write them down if we thought of anything else, but what else is there to ask?

We wrote to the make a wish foundation to try and enlist their help for Grace to go to a music festival. She would have loved to go to Reading/Leeds, all of her favourites together. She loves the Klaxons, she knows all of the words to all of their songs and it would have been the only opportunity for her to see Fall out Boy in this country this year, but whilst they have accepted the request, the procedure takes quite a while to get moving and sadly it has gone past.

I kept reasoning with myself that we were awful frauds for wanting to use the foundation, but it was mainly because camping or queueing and the sanitary state of things and how to do meds etc would make it impossible for us to do it otherwise, and just wanted to enlist their help so that she could go but still have a bit of luxury.

It will never enter my head in future, that little girlie works so hard to stay well and keep up with everyone else, and also she said if the Foundation contact us now she doesn't want to do anything else....... think I might have let her down on that one a bit :(