This mornings update

This morning Grace still hasn't tried the hypertonic saline as the pharmacy still haven't quite got their act together, it would seem that now that they have agreed to prescribe, they are still having a little difficulty in mixing it up, but we are hopeful that it will be this morning.

The Dr's have decided that Grace will be transferred back to her own hospital in Coventry and remain there overnight for another 24 hours observation, and that she will remain on IV's for another week.

Obviously all of the results are not back yet and will take a week or so, but the Dr's have decided if they find nothing else that Grace will definitely trial over night oxygen.

Grace is feeling much better today and more like her normal self...............

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.........

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....................

Today Grace wanted to go to school because its 'Children in Need' day but I could see that she was putting a brave face on from last night. Her port always gives her a hard time the first 48 hours after access and even after calpol she was whincing with pain (under her breath).

Anyway after her first dose of ceft this morning she was totally done in, all white and sickly and had to lye down, so she just couldn't manage school and admitted defeat, we also had to cancel taking Nanna shopping, and will attempt it again tomorrow.

I got a little panicky as they sent the ceft in 2g bottles and we normally get 1's or 1's and halfs. So we had to add 10ml of water and the draw off 7.5 and then dilute to 20ml.... easy for Mark but i'm not good at maths and I keep worrying that its wrong especially when she felt really poorly afterwards.

She is fine now and we seemed to have played every board game that we own and eaten tonnes of satsumas and watched christmas films on sky all day. We have also made lots of lil luvables bears with her bear stuffing factory - strange that she had it for christmas last year and only made one,and we have waited until now to finish making them.

Grace seems a little better in the last few weeks, maybe its the azithro, but it was good to see Dr S smiling yesterday and saying he was pleased. She still gets bouts of exhaustion however, and she has had 6 lots of IV's in 6 months, but her sats were 94 yesterday. We didn't get the opportunity for a lung function test and it was 46% last time, and that was with improvement, but she has to go back to the hospital to do them next Thursday and spend some time with the physio to get her in ship shape for her bronchoscopy on 26 November.

I don't want to speak too soon, but maybe the downward spiral has gone into reverse (fingers crossed)

Horrors of CF

Grace has just gone to bed..... she has spent the evening down stairs with us because we have purchased Harry Potter and the Order of the Phoenix. It actually finished sometime ago, but she decided to tell us that she hates having to do any treatments physio etc, and she hates going into hospital to stop over night, infact she even hates going to clinic - the smell disgusts her and last time we were in she was sick as a result of the reaction to azithro, shortly before she was sick she had eaten a very multicoloured jelly from the hospital restaurant and now she can't get the jelly out of her mind and she just doesn't want to go back.

She has to go back on Thursday to be set up for IV's ahead of her bronchoscopy on 26 November......... what do you say to a 6 year old when they tell you something like that?

Builders and dance festivals

I have been to the gym this morning, I had a good run and did some abs work. On Friday I had a good run and I also swam and used the jacuzzi. I went later in the day on Friday and afterwards had lunch, which was a very nice mushroom soup and a sandwich, but I couldn't finish it all, (I couldn't have had mushroom lol!)

Grace has been in a dance festival all weekend, she got a silver medal for her 'Rumbly in my tumbly' dance trio, only two points off gold! She found it tough going this morning though getting ready for school, but I think showing the medal in assembly kept her going.

The builders haven't been since last Wednesday, we have phoned them around 19-20 times over the weekend and they haven't replied, we had a text message to say they would be here Friday at 1.00pm but they didn't turn up. We have decided to just send them a message at the end of today if they haven't contacted us to say that we are going to get someone else to finish the work and pay them whats outstanding so the builders won't be receiving anymore money.

We have already had a quote from a decorator to finish the kitchen off properly, the painting is atrocious and some has peeled off in areas where they painted on damp plaster. Also on Wednesday they put spray foam into the whole they made on the wall of the stairs, my words before they left was "Will it spill out?" they told me that I was quite safe and it wouldn't..... I now have a very stiff stair carpet which will probably need replacing and we still have to have the repair done to the wall, which I didn't mind about because these things don't always go according to plan and little hiccups happen, but they just need repairing at no extra cost to me.

All of this probably means that I have to find someone else now to do my porch and my drive way. I wanted all done before December even began, but it looks as though it won't get done until the New year now. We have had a sh*t year generally, Graces health hasn't been great and we have had to contend with all of this grief and the thing that gets me the most is that they just don't seem to give a damn!

We had friends round for dinner on Saturday evening ( a belated birthday dinner because the builders hadn't finished)and they still haven't so we have given up waiting, and they commented on the fact that I had lost so much weight, so for all of those people out there that can't seem to find a diet that gets weight off and keeps it off...... try getting builders in, it's a miracle diet.

Hope

Not much to report, have been to the gym twice this week and was very pleased with my work outs.

Grace has seemed to cope ok with the compromise on Azithro (every other day) she has complained of tummy pain at around 10.30 - 11.00 each day she has taken azithro, and we have tended to give it to her very early at about 6.30ish before physio to give her atleast an hour before she eats and then she will take her ranitidine after breakfast.

Coughing is not high on the agenda this week, things do seem to be drying up a little, although she still has a very runny nose, but the tiredness is kicking in again and the breathlesness. We did flu jabs on Tuesday so Grace is glad she got that out of the way. We had them done at the same time, well I went first and she followed my reaction with not even a flinch!

I have titled the post 'Hope' because this time last year a friend of my mine was desperately hanging on to life whilst awaiting a double lung transplant, she got that call early in the Newyear, and today she will be getting married. This gives me much hope for the future but we also need awareness and donors.

Become a donor today its painless........

http://www.uktransplant.org.uk