Got up this morning and did the usual routine of physio, washed and dressed, breakfasted, IV's, tobi nebs and other oral nebs. (So matter of fact about it now). Infact I have thought about making short film for people to see what Grace has to do in a day.
My middle daughter Faye is studying performing arts at college, and part of her course work was to make a short film which she has now submitted, but upon discussion we thought that with hindsight we should have made a film about Grace.
So it will basically show what her routine is for the day, how many meds she is on and at the end show a friend commenting " you would never know there is anything wrong with her".
Graces first day at school on IV's upset the teachers a great deal. Generally Grace is a fighter and won't give in to anything. I told her she could come home from school when she had had enough and I tell her to sit down and have a rest all the time, but its as if she has this agenda to fit in everything now. The EA was distraught when I went to collect her at 3.30, she explained that Grace had looked very pale and blacked eyed, a bit like a panda and she really looked like she had struggled through the day. I explained that she is normally like that for the first few days, but then perks up, and true to form she is now bounding to school in the morning, (except for the bit where she feels sick because she can't stand the tobi nebs, but does it anyway). She has this little trick of belching all the way to school until she feels well enough to eat a sweet.
The teacher says we all just take it in our strides and never seem to get dragged down. I told her believe me we do, but we see the things that go on inside the house everyday, whereas outsiders never get to see. Hence the idea for the film.
Grace is due in clinic again on Tuesday, she will have completed 12 days of IV's by then. The nurse seemed to think that she would remain on them an extra week, but I can't see it making any difference how long she stays on them, presently whatever they try she is symptomatic again within days. Honestly since Christmas there has been no let up.
I've been to the gym this morning and I did a 30 minute run today, I did a few abs and that was about it really, I was just happy to get a good run in. I have had a lot to do again this morning. This included the terrible job of choosing flowers for a funeral, it would seem that we have lost a lot of people around us in the last few months, the latest being another school friend of Kristi's aged just 23. Things like this really do make you think deeply about what is and isn't important in life don't they.
http://http://tryitandsee.blogspot.com/2007_05_01_archive.html
I have decided today that I am going to buy a big hat (in loving memory of Chris) as he and his Mum like their hats, and I'm going to Ascott...... just need to find someone to go with me now, the majority of my horse racing friends are male and they don't really qualify for ladies day. My partner in crime (Mum-in-law) will be on one of her many holidays and Mark will be working as its Ascott, so I am open to any suggestions. Its a shame my niece lives so far away, but I might consider dragging her to the Kentucky Derby next year..... mmmmm now theres a thought.
Friday, 18 May 2007
Tuesday, 15 May 2007
untitled
I went to the gym this morning. I did a 27 minute run and a cool down, then I did some floor work (abs mainly). I'm hoping to go for a road run Thursday morning and the gym again Friday, I wanted to get at least 3 sessions in this week. Lately I have been so busy that I can't even take a leisurely morning at the gym these days. I used to love to run and swim and then have a coffee, but it seems I have to get things over and done with and get going onto the next thing.
Today I met Mark at Starbucks and we had a nice coffee, he's off work today and tomorrow, he did his banking whilst I was at the gym and we had the rest of the day to ourselves. We spent the afternoon watching the horse racing and trying to pick the forecasts on each race (because we normally do pick 1st and 2ND between us if we've not got any money on it).
Grace has been to school this week despite being on IV's, she had a tough first day yesterday, but seemed better today, although she is very tired now. I think the meropenum is affecting her appetite as she is not normally difficult to feed. Today she did eat her packed lunch at school but could barely eat her breakfast and has had two b b q chicken wings for tea and a flaked cornetto type ice cream.
The nurse came out yesterday to check her tobi levels and she said that judging by the way she was yesterday then it would be unlikely that she gets taken off IV's after 14 days because her cough had become considerably loose. Which is complete piffle as she always gets a very loose cough as soon as she starts IV's, I think its just the meds digging up all the rubbish from the bottom of her lungs which wouldn't come out without help.
Tomorrow we are due at BCH for Graces 6 monthly check. It has been re-arranged once already so that Dr Weller could see her at Coventry clinic, but he missed us due to traffic problems. So this is the new appointment which we have now cancelled again today as she is being seen at Coventry on 22ND of this month. The secretary asked us when we would like our next appointment so we asked for September which will put us back on par for Graces 6 monthlies.
All the same we have decided to have a day in Birmingham and break the week up for Grace. I know she should be in school but a little treat doesn't harm now and then especially as the school knew she would be out today anyway. I'm sure they will give her homework to catch up and she will complete before the majority of the children that should have done it in class.
I did write a considerable few paragraphs on the educational system, but decided to delete it because it was nowhere near as edumacated and eloquent as a learned friend has written recently......theres no worries of me ever becoming Prime Minister.
Today I met Mark at Starbucks and we had a nice coffee, he's off work today and tomorrow, he did his banking whilst I was at the gym and we had the rest of the day to ourselves. We spent the afternoon watching the horse racing and trying to pick the forecasts on each race (because we normally do pick 1st and 2ND between us if we've not got any money on it).
Grace has been to school this week despite being on IV's, she had a tough first day yesterday, but seemed better today, although she is very tired now. I think the meropenum is affecting her appetite as she is not normally difficult to feed. Today she did eat her packed lunch at school but could barely eat her breakfast and has had two b b q chicken wings for tea and a flaked cornetto type ice cream.
The nurse came out yesterday to check her tobi levels and she said that judging by the way she was yesterday then it would be unlikely that she gets taken off IV's after 14 days because her cough had become considerably loose. Which is complete piffle as she always gets a very loose cough as soon as she starts IV's, I think its just the meds digging up all the rubbish from the bottom of her lungs which wouldn't come out without help.
Tomorrow we are due at BCH for Graces 6 monthly check. It has been re-arranged once already so that Dr Weller could see her at Coventry clinic, but he missed us due to traffic problems. So this is the new appointment which we have now cancelled again today as she is being seen at Coventry on 22ND of this month. The secretary asked us when we would like our next appointment so we asked for September which will put us back on par for Graces 6 monthlies.
All the same we have decided to have a day in Birmingham and break the week up for Grace. I know she should be in school but a little treat doesn't harm now and then especially as the school knew she would be out today anyway. I'm sure they will give her homework to catch up and she will complete before the majority of the children that should have done it in class.
I did write a considerable few paragraphs on the educational system, but decided to delete it because it was nowhere near as edumacated and eloquent as a learned friend has written recently......theres no worries of me ever becoming Prime Minister.
Friday, 11 May 2007
Day 1 at home on IV's
Yesterday morning Graces nurse came out to access her port ready for IV's. It was very smooth and quick and she didn't bother at all (hooray for entinox!. Grace has never been better since we switched to entinox gas to gain access, before when we used amitop cream she would start panicking as soon as we had put it on the port area.
We spoke to the nurse about the e-flow as she had brought it along with her but the part I had ordered (drug chamber and filter) came without instructions so I didn't know how to prepare it. She did a test dose of saline to show us how it assembles and agreed to meet us at the hospital at 12.00 to do the dose for real. We arrived at about 10.45 and was shown to a room to drop Graces stuff off and then had to go to do a lung function test. When we arrived back from lung function Grace had to then do the test dose of tobi in the new machine.
Well we certainly wasn't prepared for the reaction. Grace couldn't keep it in her mouth to inhale more than twice without coughing and wretching! Apparently it has a taste sort of like aniseed or mint (both of which Grace can't stand, it was a nightmare trying to get her to use normal toothpaste)anyway she became very distressed and we had to keep switching it on and off and it took around and hour to do a 2 minute dose. She kept crying and crying so the nurse went down to the hospital shop to get her some fruit pastels to try and suck one whilst inhaling but she just ate the sweet and refused blankly to let us put it back in her mouth. Eventually another nurse said why don't you just hold it near your mouth and inhale? Well that worked enough in order to finish the dose.
After that traumatic experience we then did refresher training on IV's and administered tobi and meropenum and Grace waved to her friend from school who has asthma and was on the opposite ward,three nurses, Mark and myself then had a go at doing the blows on the lung function machine, and then went off to Starbucks for some therapeutic cake and coffee.
When we got home I got physio out of the way quickly so that we could do the dreaded tobi nebs. Grace was a little panicky but I told her she didn't have to put it into her mouth until she was comfortable with it, and I moved my new cushions out of the way just incase (chucked up on new shoes once when doing gastrographin). She coughed a little at the start but managed to keep inhaling and I managed to get her to put the mouth piece into her mouth near the end when the vapour was trailing off. It is very overwhelming and the vapour just billows out at the start and I think thats what made her panic, along with the vile taste (the nurse said she thought it tasted like gin and tonic, maybe I should have a few myself).
This morning I have kept Grace off school for two reasons, firstly, she is always a bit sore from being accessed for a couple of days and is very cautious in her movements, and secondly, because she has not had meropenum before I wanted to make sure she was ok with it before I left her to her own devices.
That means that I am unable to get to the gym today. Mark will be working until 9.00pm as there is late night racing and he is a member of staff down due to annual leave. So that left the only alternative of road running. I went out at around 6.40 and it was nice and cool and windy. I did a 25 minute straight run, and then had to walk round the block twice for my cool down, my muscles were very tight. I got home did some abs exercises and had a shower and was sitting on the bed chatting to Mark and Grace by 8.00am Grace has now had her first IV's for the day and Mark has gone to work. Now for the next dose of tobi nebs....................
We spoke to the nurse about the e-flow as she had brought it along with her but the part I had ordered (drug chamber and filter) came without instructions so I didn't know how to prepare it. She did a test dose of saline to show us how it assembles and agreed to meet us at the hospital at 12.00 to do the dose for real. We arrived at about 10.45 and was shown to a room to drop Graces stuff off and then had to go to do a lung function test. When we arrived back from lung function Grace had to then do the test dose of tobi in the new machine.
Well we certainly wasn't prepared for the reaction. Grace couldn't keep it in her mouth to inhale more than twice without coughing and wretching! Apparently it has a taste sort of like aniseed or mint (both of which Grace can't stand, it was a nightmare trying to get her to use normal toothpaste)anyway she became very distressed and we had to keep switching it on and off and it took around and hour to do a 2 minute dose. She kept crying and crying so the nurse went down to the hospital shop to get her some fruit pastels to try and suck one whilst inhaling but she just ate the sweet and refused blankly to let us put it back in her mouth. Eventually another nurse said why don't you just hold it near your mouth and inhale? Well that worked enough in order to finish the dose.
After that traumatic experience we then did refresher training on IV's and administered tobi and meropenum and Grace waved to her friend from school who has asthma and was on the opposite ward,three nurses, Mark and myself then had a go at doing the blows on the lung function machine, and then went off to Starbucks for some therapeutic cake and coffee.
When we got home I got physio out of the way quickly so that we could do the dreaded tobi nebs. Grace was a little panicky but I told her she didn't have to put it into her mouth until she was comfortable with it, and I moved my new cushions out of the way just incase (chucked up on new shoes once when doing gastrographin). She coughed a little at the start but managed to keep inhaling and I managed to get her to put the mouth piece into her mouth near the end when the vapour was trailing off. It is very overwhelming and the vapour just billows out at the start and I think thats what made her panic, along with the vile taste (the nurse said she thought it tasted like gin and tonic, maybe I should have a few myself).
This morning I have kept Grace off school for two reasons, firstly, she is always a bit sore from being accessed for a couple of days and is very cautious in her movements, and secondly, because she has not had meropenum before I wanted to make sure she was ok with it before I left her to her own devices.
That means that I am unable to get to the gym today. Mark will be working until 9.00pm as there is late night racing and he is a member of staff down due to annual leave. So that left the only alternative of road running. I went out at around 6.40 and it was nice and cool and windy. I did a 25 minute straight run, and then had to walk round the block twice for my cool down, my muscles were very tight. I got home did some abs exercises and had a shower and was sitting on the bed chatting to Mark and Grace by 8.00am Grace has now had her first IV's for the day and Mark has gone to work. Now for the next dose of tobi nebs....................
Thursday, 10 May 2007
Sad News
I learned this evening that my good friend Suzie's son died late last night after fighting a very tough battle with CF......................
R.I.P. Chris Pearson xx
R.I.P. Chris Pearson xx
Tuesday, 8 May 2007
Change of plan
I didn't manage to get to the gym this morning. Grace woke up at 6.15 and said she was really cold. I checked her temp and gave her some calpol. She was 37.4 so not too hot but she didn't look too good.
So she is off school today. Instead, because I was already up, I left Grace in bed with Mark and decided to go for a run before he went to work,who knows when I'll get another chance? I might get out tomorrow morning but its Marks only time off until Thursday and then we will probably be at the hospital all day collecting medication and getting port access and testing out tobi on the new eflow etc etc.
My run was very invigourating, especially when its really windy, you get your cobwebs well and truly blown out, and it also gives me time to run off anything that has really gotten on my nerves or bothered me so that I am distracted. I ran for 19 minutes without a break, which I am pleased with, its less than I am used to, but I don't want to over strain my knee. I walked for another 2 minutes and then ran for a further 6 minutes. I did some cool down exercises and stretches and a few abs. M phoned me later in the day to make sure I had done my exercises because she hadn't seen me at the gym.
When I went shopping in Solihull last week, we bought a Bonsai, its lovely and very therapeutic, I keep it on the windowsill in the kitchen and I will take a photo to post here so that I can remind myself of its progress.
As I am unable to go out today I tried to do the shopping on line. It went very well and I couldn't believe how easy it was. However, when I went to arrange a slot to have it delivered they didn't have one available until Thursday which is rubbish considering I need my supplies today! I will have to wait for Faye to come home from college so that she can stay with Grace whilst I shop. Mark is working until 9.00 this evening now that its late night racing, still I shouldn't complain we had a lovely day out at Warwick racecourse yesterday, I didn't have much luck but a 9-1 winner saved me from disaster. Grace on the other hand won £15 on the last race because the horse was called 'Jill'. She soon put that in her piggy bank when she got home.
This last piece is dedicated to Chris Pearson, he is currently fighting for his life and his Mum is a good friend and she and indeed her entire family are struggling. I really hope that Chris can find the strength to pull through. He had a double lung transplant last year about 12 days before we did the HAWC and came on in leaps and bounds and baffled all of the Dr's by his progress. I'm sending positive thoughts and get well thoughts and really wish that he could do it again...... Lots of love and wishes to all the family and fingers and toes and everything crossed here at the Lombard house hold.
So she is off school today. Instead, because I was already up, I left Grace in bed with Mark and decided to go for a run before he went to work,who knows when I'll get another chance? I might get out tomorrow morning but its Marks only time off until Thursday and then we will probably be at the hospital all day collecting medication and getting port access and testing out tobi on the new eflow etc etc.
My run was very invigourating, especially when its really windy, you get your cobwebs well and truly blown out, and it also gives me time to run off anything that has really gotten on my nerves or bothered me so that I am distracted. I ran for 19 minutes without a break, which I am pleased with, its less than I am used to, but I don't want to over strain my knee. I walked for another 2 minutes and then ran for a further 6 minutes. I did some cool down exercises and stretches and a few abs. M phoned me later in the day to make sure I had done my exercises because she hadn't seen me at the gym.
When I went shopping in Solihull last week, we bought a Bonsai, its lovely and very therapeutic, I keep it on the windowsill in the kitchen and I will take a photo to post here so that I can remind myself of its progress.
As I am unable to go out today I tried to do the shopping on line. It went very well and I couldn't believe how easy it was. However, when I went to arrange a slot to have it delivered they didn't have one available until Thursday which is rubbish considering I need my supplies today! I will have to wait for Faye to come home from college so that she can stay with Grace whilst I shop. Mark is working until 9.00 this evening now that its late night racing, still I shouldn't complain we had a lovely day out at Warwick racecourse yesterday, I didn't have much luck but a 9-1 winner saved me from disaster. Grace on the other hand won £15 on the last race because the horse was called 'Jill'. She soon put that in her piggy bank when she got home.
This last piece is dedicated to Chris Pearson, he is currently fighting for his life and his Mum is a good friend and she and indeed her entire family are struggling. I really hope that Chris can find the strength to pull through. He had a double lung transplant last year about 12 days before we did the HAWC and came on in leaps and bounds and baffled all of the Dr's by his progress. I'm sending positive thoughts and get well thoughts and really wish that he could do it again...... Lots of love and wishes to all the family and fingers and toes and everything crossed here at the Lombard house hold.
Friday, 4 May 2007
4 May 2007
Yay! Its Star Wars day today, (Mark you will probably be the only one that knows what I am talking about).
Been to the gym this morning, I did some tummy (abs) work and a 25 minute run on the treadmill. I am going out this evening with the girls from school to a country pub called 'The Shilton Arms' where apparently you can get a 'Desparate Dan' pie. Can't imagine I will be ordering that though.
I've been to the pharmacy this morning to collect Graces tobramycin and after learning that it needs to be refrigerated, rearranged my fridge to accomodate it. The pharmacist made a big point of saying it cost £1400. (sorry my writing down of figures is crap and so is my geography) not that that is relevant.
I went to Starbucks by myself after the gym as M had lots of ironing to catch up on, so have I but hey ho! Starbucks is above Borders book store and there is also a paperchase so I purchased some cards and had a coffee whilst doing some correspondance that muchly needed doing.
Yesterday Grace didn't have to go to school as it was being used as a polling station and as Mark was not working we decided to go to Solihull for the day. We did some shopping and had lunch at Wagamamas. I had Miso Ramen a kind of noodle soup which came in a washing up sized bowl. I couldn't finish it all and I got loads of it down the front of my t'shirt (nothing unusual for me). It also meant that we didn't vote in the local election because we weren't around. I think that whatever council we have here they are all blinkin corrupt and we still have big holes in the road.
Recently the labour council were being investigated after closing down a library saying that it was out of their hands as there were too many libraries in the city and it could no longer afford to fund it. It turned out that they made it up to spend the resources else where and now they are in all kinds of disputes for fibbing. So it sort of made me think that shopping and Japanese Restaurants were far more important.
I have just ordered Grace an 8ft trampoline and have absolutely no idea where I am going to put it, but hopefully it will give her the exercise she needs. I was going to re-enrol her for swimming this week as they had kindly kept her place open until she returned, but she is starting IV's next week so I'm glad I waited, but atleast she will get 3-4 months over the summer before she should need more IV's. Next appointent will be BCH on 16 May.
Been to the gym this morning, I did some tummy (abs) work and a 25 minute run on the treadmill. I am going out this evening with the girls from school to a country pub called 'The Shilton Arms' where apparently you can get a 'Desparate Dan' pie. Can't imagine I will be ordering that though.
I've been to the pharmacy this morning to collect Graces tobramycin and after learning that it needs to be refrigerated, rearranged my fridge to accomodate it. The pharmacist made a big point of saying it cost £1400. (sorry my writing down of figures is crap and so is my geography) not that that is relevant.
I went to Starbucks by myself after the gym as M had lots of ironing to catch up on, so have I but hey ho! Starbucks is above Borders book store and there is also a paperchase so I purchased some cards and had a coffee whilst doing some correspondance that muchly needed doing.
Yesterday Grace didn't have to go to school as it was being used as a polling station and as Mark was not working we decided to go to Solihull for the day. We did some shopping and had lunch at Wagamamas. I had Miso Ramen a kind of noodle soup which came in a washing up sized bowl. I couldn't finish it all and I got loads of it down the front of my t'shirt (nothing unusual for me). It also meant that we didn't vote in the local election because we weren't around. I think that whatever council we have here they are all blinkin corrupt and we still have big holes in the road.
Recently the labour council were being investigated after closing down a library saying that it was out of their hands as there were too many libraries in the city and it could no longer afford to fund it. It turned out that they made it up to spend the resources else where and now they are in all kinds of disputes for fibbing. So it sort of made me think that shopping and Japanese Restaurants were far more important.
I have just ordered Grace an 8ft trampoline and have absolutely no idea where I am going to put it, but hopefully it will give her the exercise she needs. I was going to re-enrol her for swimming this week as they had kindly kept her place open until she returned, but she is starting IV's next week so I'm glad I waited, but atleast she will get 3-4 months over the summer before she should need more IV's. Next appointent will be BCH on 16 May.
Wednesday, 2 May 2007
02 May 2007
Went to the gym yesterday. I did around 22 minutes on the treadmill, and did some floor work. I worked on abs and arms. I have been pestered by the personal trainer all week and eventually I told her yesterday that my knee was hurting due to her insistance that I keep doing exercises on it. She told me to stay off the treadmill,but I have been running on it since returning from holiday and have had no ill effects from it, she has now advised me to see a physio. I know this, but I don't really want to find out whats wrong with it incase it means big surgery or something that is going to put me out of action for a while. Anyway as long as I can run that will do me.
We went out for tea last night for Fayes birthday to WingWahs Chinese restaurant (a big favourite with the children because of the chocolate fountain) and I ate far too much so I will have to run my socks off tomorrow.
Grace went to clinic yesterday, mainly the appointment was arranged so that she could do a test dose of tobramycin, but unfortunately even though I put the prescription into the pharmacy a week ago, it is still proving difficult for them to get it. They still saw her and her lung function and sats had improved marginally. However she still had signs of a wheeze on her left lung so IV's are starting next Thursday and also it will give them the opportunity to try the tobi up on the ward whilst she is being accessed. She is also going to try meropenum instead of tobramycin IV's, one that she hasn't had before so hopefully there will be a noticeable improvement. I think that she has just become immune to them all, still it doesn't bother her any presently.
I have been asked to mention our family friend 'Dave' in my blog as he has just become an Internetee? he has only just gone on to broad band internet and has never had it before, so he says he isn't going to read my blog unless he is mentioned in it. So here goes - Dave, Dave,Dave, Dave,Dave Dave, Dave and finally Dave.........
We went out for tea last night for Fayes birthday to WingWahs Chinese restaurant (a big favourite with the children because of the chocolate fountain) and I ate far too much so I will have to run my socks off tomorrow.
Grace went to clinic yesterday, mainly the appointment was arranged so that she could do a test dose of tobramycin, but unfortunately even though I put the prescription into the pharmacy a week ago, it is still proving difficult for them to get it. They still saw her and her lung function and sats had improved marginally. However she still had signs of a wheeze on her left lung so IV's are starting next Thursday and also it will give them the opportunity to try the tobi up on the ward whilst she is being accessed. She is also going to try meropenum instead of tobramycin IV's, one that she hasn't had before so hopefully there will be a noticeable improvement. I think that she has just become immune to them all, still it doesn't bother her any presently.
I have been asked to mention our family friend 'Dave' in my blog as he has just become an Internetee? he has only just gone on to broad band internet and has never had it before, so he says he isn't going to read my blog unless he is mentioned in it. So here goes - Dave, Dave,Dave, Dave,Dave Dave, Dave and finally Dave.........
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