Quick update

First of all I would like to thank everyone for their comments, it really is reassuring. I have returned home this afternoon to keep a hospital appointment of my own and Mark is staying at the hospital this evening.

Grace went to theatre at 9.45 Monday morning and was very brave until she walked into theatre and saw everyone in masks with their gloved hands up in the air waiting for her and promptly went running for Dad! He managed to talk her into sitting on the bed and they talked her into trying some entinox which then changed after a few minutes to gas and she went to sleep very quickly. We gave her a kiss and went off for a cup of tea.

She returned at 11.15 in quite a distressed state and it took some time to calm her down. She was kept on oxygen for most of the day and her blood pressure took a while to get back up but she slept for a few hours which was good for her.

When she was fully awake she had to go to xray because they had put a PH probe in place and had to be checked to make sure it was in the right place. They did the xray at 2.00pm and no one came to look at it until I kicked up a stink at 4.00pm because until it had been checked she was nil by mouth and this meant that she had now reached 21 hours without any food or even water.

Grace having the problems that she does without food promptly went into one of her hypo thingies which was bad because it caused me to lose my temper with staff, well with gastro nurse who tried to justify it with the standard "well we have been very busy with lots of other patients to see" and then, the one that made me blow my top " Dr R asked us to fit this in, it wasn't booked". The fact that Grace couldn't lift her head off the bed because of lack of food mainly due to some one just turning up to check an xray, was not a good enough excuse as far as I was concerned.

It turned out to be a good thing also, because physios and consultants etc could see it taking place and actually believed me, and has prompted them to check her adrenal gland today and the endocrine specialists are coming to see her tomorrow.

The findings so far - she does in fact have bronchiectasis and some quite bad scarring (not sure if that's the same thing but I'll read up on it later) Dr R was very surprised how much gunk was in Graces lungs 12 days into IV's and only four weeks after the last course. They also did an endoscopy and things looked OK in that department, but the ph probe might show up something and they also took biopsy's to see if anything showed up there. All in all they were very thorough.

They have decided to start Grace on hyper tonic saline which she will be trialing this evening and an acuapella tomorrow. Also they have told us to do DNase via the eflow as opposed to the Ineb. They felt that the over night saturation's were border line so they are also going to trial overnight oxygen to see if this boosts her during the day.

On the up side Graces sats touched 95 more than once today. Mark has phoned to say that they have now taken out the PH probe which really was the only thing that I have ever seen Grace phased by - every time she tried to eat she sneezed and coughed at the same time because it irritated so much and then refused to have anything but chocolate milkshake. He also said that since the probe was removed she has gone on a mission in the hospital restaurant. I'll phone him again shortly to see how the hyper tonic saline went and to say night night.... hopefully she will be home tomorrow.

Ooh not such a quick update.........