Monday, 30 April 2007

Last day of April

Its been a hectic week, so much so that I haven't been to the gym, and this morning was no exception. I have so much to do that I have been out for a run on the road because I just haven't had time to make my way to the gym.

I have to go to the bank and its Fayes birthday tomorrow and I haven't done any shopping for her yet (not that I have any idea what to get).

Grace is at clinic tomorrow to try her test dose of tobi (which reminds me I also have to go to the pharmacy to pick it up today. She has been a little under the weather but not too bad. She has complained about her tummy alot the last few days and he bowels are a bit hit and miss but they always are when she is on cipro. Today I have started her on co-trimoxazole because we have run out of cipro and she has been on it for 6 weeks now. She is very hoarse and tight chested at the moment and sounds very croaky although she isn't coughing really, its just her endless streaming nose at the moment.

I feel sure that she will be put on IV's but we have decided that we are going to attempt school this time. It should be easy enough if she has her midday dose at 4.00p.m.

I ran for 22 minutes out on the road today, and it was quite comfortable apart from the fact it was hotter than normal, so probably could have ran longer if it was a mild day. Anyway I have the bug for it again now and I am sure I will be out on the road every other day again soon.

Grace is due in BCH on 16 May also. Judging by the way she is at the moment though, I can't see her coming off prednisalone. We have been running around the perimiter of the school field for about 10 minutes every night after school and she spent all day yesterday on a trampoline so hopefully her lung function will be impressive. We'll have to wait and see.

Wednesday, 25 April 2007

First run for two weeks!

I did my first run today for two weeks due to resting because of my knee injury. I went to the gym to do it on the treadmill so that it wasn't too hard on my knee, and it went fine. I ran for 22 minutes and then decided that was enough. During running I thought about doing the cool down and then speeding it up again for another 10 minutes, but then decided I had better take it slowly.

I did some floor exercises, working on my abs and legs, but found the leg raises very difficult. I avoided anything that involved bending my knee and found it all ok. I did 8 lengths of the pool afterwards and found that gave me a couple of twinges so decided to get out, and then said hello to 'Mr Jacuzzi' oooh I have missed it even though I have had the pool in Gran Canaria virtually to myself for a week (apparently I was the only adult stupid enough to brave the cold water).

I haven't signed up for the Hydro Active Challenge yet. I want to do it with Kristi again if she wants to do it, but I found the travelling to Leicester to meet up with other people and sharing with other people all very daunting last year. I am hoping that Kristi and I can just book a room for ourselves and then do our own thing for the weekend.

Grace had a great time in Gran Canaria, it was just what she needed. We encountered a few problems along the way. I bought a frio cool pack and took her dnase with us, but the flight was delayed so long that I had to throw it away when we got there, luckily we could manage without that on for a week.

Although on steroids everyday and a further week of cipro, Grace still continued to be very snotty and a sneeze at any given moment would send us all running for tissues whilst she tried to contain it all behind her hand. She didn't cough much whilst we were away and wasn't producing anything during physio, but just a couple of days into returning home she has started to become loose and producing sputum (did it at the checkout in Morrisons whilst I was packing my shopping) it made the checkout lady panic I can tell you!

I have an appointment today with the GP to discuss the prescription of tobramycin and all other aspects of Graces medication. I still hit a brick wall on occasions so thought it would be a good opportunity to clear all these things up with the senior partner. Grace will then have to do a test dose of tobi on 1st May and they have also told us that if there was no improvement at this time since the nurse last saw her, then she would be starting IV's that week also.

I would also like to send my love and say that my thoughts are with you at this sad time to my friend and driving Instructor Bill, who since my last posting has lost his daughter. She was in the same class as Kristi and was very talented. Sadly murdered in China recently. R.I.P Lyndsay.

Thursday, 12 April 2007

My Knee

After yesterdays run my knee, which has felt a bit dodgy for some time, took a bit of a bashing from the impact of the road, coupled with the fact that I decided to cut the grass that was extremely long and really took some effort, is now playing up terribly.

I had virtually no sleep last night as wherever I tried to rest my leg just made it hurt more. We went out for tea and I wore Marks knee support but that just atagonised it and by the time I got home I was very squeamish and shivery.

Today I have managed to limp my way round the Bull ring, trying not to complain because I told Mark my knee was fine, and to be fare it was better than yesterday, but now I'm struggling and a little worried that it might be serious. I am quite cross really because all of the running I have been doing and I have never had any problems because I know my limitations where my knees are concerned (i.e, not bending them) but the personal trainer has convinced me over the last few weeks that I should work on them and that that was the best thing for arthritic knees, but after every session my left knee has felt strange. It feels as if something inside my knee is on a spring and if I bend it I feel like I have to exercise control to stop it from springing back. After yesterday however, it really hurts aswell.

I am afraid to go and get it checked over incase I'm banned from running whilst it recovers, if indeed it can without surgery. Atleast whilst I am in Gran Canaria next week I can swim and relax and try and give it a break.

Grace is still snotty beyond belief, i've never known anything like it, very thick mucous and never ending, we can't go anywhere without packs and packs of tissues. She is also having prednisalone every day now, hopefully that will make a difference. The nurse said she had detected a wheeze on her right side and most definitely will go on IV's when she goes to clinic to trial the tobramycin. If ofcourse its actually prescribed, I have a feeling that there are going to be a few hurdles still, but maybe if I explain to the Dr that its only six months out of a year and also that the promixen will be halved aswell then it will be not such a big chunk of their resources.

Grace is currently at the driving range with Daddy trying out her new clubs and then they are going to the carwash whilst I sit hit quivering at my wobbly knee and looking at the new clothes I've bought to take on my holibobs!

Wednesday, 11 April 2007

Positive attitude

I found it hard to sleep last night as the events of the day were still wizzing around in my mind. I feel sometimes helpless that I can't control some events. I am glad that I stayed calm and didn't get angry with anyone, after all they are just doing their job and I would complain if they poisened Grace because they weren't being thorough.

I know that it will all be sorted out today and that I worry over nothing, well not even worry really, it again is just the fact that I can't control things and make sure that the cipro was given to me without problem and now the Tobi situation looming over us.

So I was up very early and found myself logged into the computer when I came across Emilys post.

She made me think of the humerous side of the situation and the fact that Grace is here and doing well and nowhere near the situation people such as Chris and Lisa are presently and indeed Emily just a few months ago. This positive attitude is something I hope Grace will attain and I will strive to help her achieve it, so I must remember to stop dwelling on such things and remember that they are just hurdles in a day.

With that in mind I got up and put my new trainers on and ran and ran, I did a good 25 minute straight run on the road, at the end I felt great and did some tummy work and a few stretches upon my return, and bathed my feet because the new trainers hurt like hell! I took Grace a drink of water in bed and she said I was the best Mummy in the whole world...............

Tuesday, 10 April 2007

A thoughtful day

Its been one of those days when you feel a little bit baffled and have your hand on your chin and ponder.

Firstly the nurse came to see Grace, did a cough swab and after much effort got her Sats up to 92. She hasn't had dnase for 5 days so thats the theory of it lowering lung function right out of the window, but also so is the lack of exercise the cause of low lung function because Grace has worn herself out this weekend running on the beach, playing cricket and going up and down lots of slides and hills at a theme park.

She has a bit of a wheeze on her right hand side so she has to continue on cipro and 10ml of prednisalone everyday until we return from holiday. She has been booked into clinic for a test dose of toby on 1 May so they have also decided its time for IV's again as she has been 'niggling' for some time, as Graces nurse described things.

I contacted the Dr's Surgery requesting cipro and took a copy of the letter regarding the tobramycin. They phoned me later to say that the Dr on duty was not a senior member so he couldn't authorise toby and also the cipro because its not on repeat. I explained that she always has it, but unfortunately a bulk order and two further prescriptions from the hospital meant that we hadn't ordered it from the surgery since Feb 06! They are going to book an appointment for me to see the Senior Dr in the morning for cipro which is fine but I have made a further appointment to discuss tobi because they have realised that it is £1400.00 per monthly dose. I knew it was expensive but blimey! They also thought that the cipro didn't remain on repeat because it was an antibiotic and you can't get those on repeat, never mind that she has augmentin, co-trimoxazole and azithromycin on the repeat, so I explained about the antibiotics and prophylactics, but I'm sure there will come a time when I have to repeat it all again, still they do their very best for us and I'm sure I will offload some of our many Easter eggs onto them.

They asked me what would happen if it wasn't prescribed and I told them I am unsure whether it would be prescribed by the hospital or whether we have to change surgery until we find a GP that will prescribe. Now I feel, should I ask the senior member to discuss it with Dr Simmonds?, and I also feel like saying don't describe it if you don't want to. It makes me feel really awful, so quite a lot for me to ponder. Also Grace has to remain on cipro whilst in Gran Canaria so the holiday for her to escape cf for a while has turned into a holiday to take cf with us unfortunately. Poor Looby Lou ................................

Monday, 9 April 2007

Return from holiday no'1

We returned late last night from Devon. We had a great time even though Grace had to be covered in sunblock due to the cipro. She also recovered from her 'whatever it was she had' very quickly, well the temperatures lifted anyway but she is still very 'snotty' for want of a more technical term (nasaley loose?).

I spoke to the nurse before we set off, she advised that we keep her on cipro and to up her steroids again to 10ml everyday. I totally ignored her obviously, and kept Grace on cipro but never changed the prednisalone, I just felt that she didn't need too. Sometimes I think they just shove more stuff down her neck without giving her the chance to see how she recovers. She would have been due to finish cipro on Wednesday but I might keep her on it until the end of the week and if there is improvement I will put her on augmentin until we get back from holiday no'2.

I have been bogged down with washing and tidying today so there is little chance of any exercise. I can't go to the gym tomorrow as I have to wait in for the community nurse to check Grace out, but hopefully I can get an early morning run.

I have just eaten a monster salad. Whilst away I get sick of the rubbish that you have to endure in restaurants that serve chips with everything. I know there are lots of nicer places to eat but when you have to accomodate faddy children and friends that only normally eat at a 'Toby' restaurant it gets very difficult to find anything on the menu that I actually like, or actually tastes like what you order. I had a steak on the way home last night at a restaurant in Evesham and it was awful!........ and its difficult for Mark to eat anywhere as he doesn't eat bread, or pork or tomatoes and lots of other stuff upset his insides. We went to a theme park on Saturday and he ate an orange and an apple all day.

Grace had plenty of physio over the weekend, she wore herself out running up and down hills, so hopefully her sats will look good tomorrow.

Wednesday, 4 April 2007

Rough night

Grace had a rough night last night, she fought a temperature most of the night, however it was much better first thing this morning. She has since had to have calpol so I know its not over yet, but she has already sent me out to Macdonalds so atleast her apetite is good and she will probably cope with going away for a few days still tomorrow.

I was going to skip the gym this morning but whilst lying bed nursing my wounds where Grace had kicked and battered me in her sleep, my alarm went off to let me know that I had a session with the personal trainer this morning. I went early so that I could do my CV before she arrived and she worked on my arms because I had already done abs also.

Back home for 10.30 and the main thing is to get Grace to rest so she is reasonably fit for tomorrow. I rang the nurse and she wants her to remain on cipro and even to surpass the three week dose that she normally has and also to up her prednisalone to everyday again at the moment. (I don't want to do that because I think she will get through this without extra pred) but thats just my opinion, and she doesn't seem to beable fight off anything at the moment.

I am sort of looking forward to tomorrow but am a little aprehensive now, hopefully things will be fine and Grace will have a great time.

Mark bought her a wood a 5 iron and a putter for Easter because she has taken such an interest in going to the driving range with him, and he says he will get the rest if the interest remains. I've just bought Easter Eggs even though I still fail to see what chocolate eggs have to do with the resurection of Christ?

Tuesday, 3 April 2007

What to do?

Another post today, well this evening actually. Grace has gotten worse, she has developed quite a high temperature of 38.5. I can't understand what has dragged her down. She has had two colds in the last two weeks the really sneezy sort, but not really any temperature. She is just going into her third week of cipro and has started to develop quite a cough and now the temperature. She is currently sleeping on the sofa. I have insisted that she stayed there all afternoon as she seemed pretty exhausted, but she didn't argue with me. She has gotten off once this evening to go to the toilet and it was a terrible struggle to walk up the stairs, she has also been very teary.

Where do we go next from here? when will this ever stop? It would seem that nothings working at the moment........

I have been asked this evening to post a link and to remember Lisa who is desperately battling an infection whilst awaiting transplant.

Although I do not know Lisa I would like to wish her a speedy recovery and hope that she gets that transplant call very soon.

Please take time to consider becoming a donor. Thank you.

Half term

The plan is to go away for a few days at Easter weekend, but Grace so is again under the weather. She had a funny turn on Saturday night but seemed to recover and was fine on Sunday. She is currently unwell again with one of her turns and is lying on the sofa but we have been out for lunch and bowling with a friend and we had friends over yesterday and Graces cousin has come from America and we went out for dinner with last night also. So generally I think she is just exhausted. She has been given strict instructions to remain lying down even if she starts to feel better.

I think she will be able to muddle through Easter weekend and hopefully our week in Gran Canaria will do her some good.

I went for a run out on the road yesterday and managed a very pleasing circuit of atleast 25 minutes. I am going again tomorrow as I have a full day and any time spent at the gym is just out of the question so it looks like another early morning run and hopefully it will be warmer than today.

I was due to go to the gym this morning but Mark unexpectedly had to go to work so that was the end of that. Its nice to have the children home for half term as long as you don't mind not being able to do anything you normally due during the day.

A friend that recently had a double lung transplant is currently giving an account of it on her own blog. You can read it if you click on the link below-