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

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

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.

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.

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.........

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.

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.