No kitchen presently, and I mean no kitchen, no appliances no sink no lights, nothing.
Today I have done the washing up and preparation of meds in the bathroom. I have got the kettle on my bedside table, but I can't get into the kitchen to get to the fridge which is in the middle of the floor with an extension cable trailing into the living room, to get milk etc whilst the builders are in there, and incidentally at 7.15 they're still in there.
Grace has now been told that she has to go back on IV's the day after tomorrow and also she has to be kept in from Thursday until Monday to be observed whilst trying azithro again and a few other tests discussed at BCH last week.
My main concern is that twice upon returning home today the builders had the fridge unplugged, I have to tell them that it is imperative that it stays plugged in containing dnase and tobi, which they do know but still keep doing it!!!! (Sorry Rich for bandying about exclamations, but much needed today), so therefore I am a little worried about being at the hospital whilst they run riot in my home, I already have to replace all of my rugs because they are totally ruined. On top of all this its Marks birthday on Saturday, I can't make him a cake because I don't have a cooker, so I have to rush round like a loony tomorrow to finish off his birthday shopping and also go to Marks Mums to do a wash load including pyjamas to wear at the hospital.
Well I did need to lose a bit of weight.................
Tuesday 25 September 2007
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.
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.
Wednesday 12 September 2007
God bless you Robyn
I didn't know you but saw your strong and determined character on tv..................
Now she's walking through the clouds
With a circus mind
That's running wild
Butterflies and zebras
And moonbeams and fairytales
All she ever thinks about is riding with the wind
When I'm sad she comes to me
With a thousand smiles
She gives to me, free
'It's alright, it's alright' she says
Take anything you want from me
Anything
Now she's walking through the clouds
With a circus mind
That's running wild
Butterflies and zebras
And moonbeams and fairytales
All she ever thinks about is riding with the wind
When I'm sad she comes to me
With a thousand smiles
She gives to me free
'It's alright, it's alright' she says
Take anything you want from me
Anything
Fly Little Wing...Yeah, Yeah
Fly Little Wing...
Now she's walking through the clouds
With a circus mind
That's running wild
Butterflies and zebras
And moonbeams and fairytales
All she ever thinks about is riding with the wind
When I'm sad she comes to me
With a thousand smiles
She gives to me, free
'It's alright, it's alright' she says
Take anything you want from me
Anything
Now she's walking through the clouds
With a circus mind
That's running wild
Butterflies and zebras
And moonbeams and fairytales
All she ever thinks about is riding with the wind
When I'm sad she comes to me
With a thousand smiles
She gives to me free
'It's alright, it's alright' she says
Take anything you want from me
Anything
Fly Little Wing...Yeah, Yeah
Fly Little Wing...
Friday 7 September 2007
Update on the week
Grace went to school yesterday, she managed to complete the day and only asked the teacher to phone me at 3.15. The teacher told her that she only needed to wait another 15 minutes until I got there, but she said her tummy pains were so severe that she just couldn't stand anymore.
Faye collected her from school as she was nearer to home than I was, and when I got home she was fine, just desperate for something to eat. I explained to the teacher this morning that it may be that they should try giving her a piece of fruit first to stem the hunger as she has been used to being able to eat when she wants during the summer and now she is back in school routine and that she will adjust.
This morning there is no tummy pain and she seems more refreshed and able to cope with the day, so hopefully it won't be long before she gets back into the routine.
She was definitely quite perky last night, and wanted to play in the garden for the first time in a while, trouble is the garden is not a very friendly place presently.
We have been informed that we should have a roof by Wednesday and that next week is the week when the wall is going to be knocked through (probably the messiest bit)so I will be having lots of fun trying to keep dust at bay.
Meanwhile here is an update of the progress on
the kitchen as modelled by Grace. Also an opportunity to view the builders on their lunch break at 9.30am yesterday morning?! Billy, Sammy and Mick affectionately known to us as Harry, Ron and Reg. Billy is the one with cake around his mouth.
Faye collected her from school as she was nearer to home than I was, and when I got home she was fine, just desperate for something to eat. I explained to the teacher this morning that it may be that they should try giving her a piece of fruit first to stem the hunger as she has been used to being able to eat when she wants during the summer and now she is back in school routine and that she will adjust.
This morning there is no tummy pain and she seems more refreshed and able to cope with the day, so hopefully it won't be long before she gets back into the routine.
She was definitely quite perky last night, and wanted to play in the garden for the first time in a while, trouble is the garden is not a very friendly place presently.
We have been informed that we should have a roof by Wednesday and that next week is the week when the wall is going to be knocked through (probably the messiest bit)so I will be having lots of fun trying to keep dust at bay.
Meanwhile here is an update of the progress on
the kitchen as modelled by Grace. Also an opportunity to view the builders on their lunch break at 9.30am yesterday morning?! Billy, Sammy and Mick affectionately known to us as Harry, Ron and Reg. Billy is the one with cake around his mouth.
Wednesday 5 September 2007
Oh my little girl
Grace has been back to school for two days. This evening she could barely eat her tea. She was leaning her elbows holding up her head trying really hard to stay awake to eat.
I put her to bed to watch a film at 5.45 and said I would do her physio later when she had perked up a bit. She didn't really perk up and physio was a bit half hearted, but atleast we completed it and meds.
Mark put her back to bed and she cried so much that we have brought her down stairs and put her on the sofa with a pillow and a blanket. She said she thinks that she doesn't feel very well but isn't sure, and she has had some tummy ache but has fallen asleep presently.
She has complained of tingling in her legs and a little in her arms for the last few days. She has complained of it a few times before, but never for this length of time.
This is just such a 'down'after the meeting last week. Presently things just seem to look more depressing by the minute. How much more does she have to endure?
Two days into school and I think I may have to keep her home tomorrow already. I hope not, I hope she feels better in the morning even though we may sleep on the sofa all night as I daren't move her presently.
Poor poor little mite she seemed really depressed by the whole thing................
I put her to bed to watch a film at 5.45 and said I would do her physio later when she had perked up a bit. She didn't really perk up and physio was a bit half hearted, but atleast we completed it and meds.
Mark put her back to bed and she cried so much that we have brought her down stairs and put her on the sofa with a pillow and a blanket. She said she thinks that she doesn't feel very well but isn't sure, and she has had some tummy ache but has fallen asleep presently.
She has complained of tingling in her legs and a little in her arms for the last few days. She has complained of it a few times before, but never for this length of time.
This is just such a 'down'after the meeting last week. Presently things just seem to look more depressing by the minute. How much more does she have to endure?
Two days into school and I think I may have to keep her home tomorrow already. I hope not, I hope she feels better in the morning even though we may sleep on the sofa all night as I daren't move her presently.
Poor poor little mite she seemed really depressed by the whole thing................
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