Off to BCH for a couple of days

Grace is going into Birmingham Children's Hospital tomorrow. We are checking in at 11.00 and she has a CT scan scheduled for 2.00.

On Tuesday she is having her bronchoscopy and upper g, i ,(gastro intestinal) endoscopy, they will also do a lavage whilst they have her under anaesthetic - that's a sort of vacuum and drain of the lungs. They also have a barium swallow pencilled in.

Grace has had to stop ranitidine for a few days because of the barium test, and her tummy is all bloated and she is getting a bit of reflux after just two days.

Presently she doesn't seem at all worried about the procedure, but she has said at least she will be asleep and can't feel any pain. Its a good way to think of things, but a pooey thing for a 6 year old to have to think about.

We saw Dr S on Thursday, generally it was to get some physio to make sure that she was absolutely clear for BCH, but her cough was dry and her sats were 93, so he was more than pleased. I have a feeling that the azithro is doing the work, maybe she had just become immune to cipro because she had been on it so long.

The Dr discussed what they might find at BCH, he feels that they will find something, and the CF nurse feels that they will find nothing, but at least it will confirm that it is indeed as they suspect that Grace, for some reason, just gets severely attacked by pseudo. Dr S feels they may find bronchiectasis - a condition that is similar to diverticular disease, where pockets form in the lungs and fill with mucous ( and not poo - thank you Mark).

Grace has also been referred for a wheel chair, it is for the purpose of putting in the boot of the car, and on days where we have quite a good walk Grace can view her surroundings comfortably without struggling for breath. This came about when she had to have an emergency port flush last week because Mark fell over whilst carrying her home from a bonfire party and she took a bit of a bashing and her port area got quite bruised, but it was fine, it did however, bring up the subject that Mark Carry's her everywhere and now that we have lost the disabled badge, we have to carry her further still. We live only 150 yards from the school gate but unfortunately its up hill and Grace struggles to manage 50 in the mornings.

A meeting has been set up in school with myself, Graces teacher and the CF Community nurse because they now feel that Grace needs a day or half a day out of school each week to recharge her batteries so that she can get through the week comfortably.

Hopefully I can report on all of this stuff in a months time and say that it has made a fantastic difference.

Now I'm off to do some Christmas shopping on eBay....................