Friday, 29 October 2010

Garlic!

We had to delay starting Sophie's clarithromycin (antibiotic) due to the MMR jab. This was because it is a live vaccine and the antibiotics would have done something funky to it and possibly stopped it taking affect. Meaning, she would have had to have a blood test to test levels and if low, a repeat injection.

Obviously we decided to wait a few days after checking with the CF team.

Well now we are on day 2 of 14 of operation kick Staph up the arse. Time to see how this little monster wants to play the game and what it's next move will be.

Sophie has another cold. Seems to be too coincidental not to be linked to her flu jab. Obviously she was brewing a new cold or the old one hadn't fully shifted before the jab. She's okay in herself except for tiredness periodically.

The nebulised saline is continuing to work. The amount of crap Sophie is shifting at times is alarming.

It is great, but I say alarming because all of this gunk was sitting down in her lungs causing mayhem, and it is no wonder, Mr and Mrs Pseudo had found themselves a nice, warm, hospitable habitat.

I cant wait for the strength to be increased to see how this couple react to it.

I've also ordered some garlic supplements for Sophie. The UK CF forum are constantly talking about how great it is at stopping colds in their tracks. It's a natural product so I thought we'd give it a go. I did struggle to find a suitable form to give Sophie as it needs to be given via her Mic-key button and eventually found a tablet form that could be crushed. Also went for odourless too!

Is anyone out there taking garlic and seen an improvement in cold prevention?
I'm interested to know.

Sophie spent her time with nanny this week at a farm and also visited a pet shop, so really sorry but no Friday food fun this week.

Sophie's nanny managed to get this picture of Sophie at the pet shop with a rabbit. The kind lady said it was nearly feeding time so allowed Sophie to feed the rabbit a carrot. Cute.








Almost forgot to mention that Sophie has started to allow us to give her chest percussion!

This is a huge turn around and although we have kept trying for 3 years, we fail miserably but our little miss happily grabs a pillow and lies across my lap and lets me do her pats. She's got a long way to go before she tolerates a full session but the relief I feel is huge. Anything Sophie will allow to beat the crap out of her lungs is priceless. I just hope we can help her out a bit and give her a break from some of the nasties in her lungs.


Will leave you with another picture of Sophie from her nanny. She wanted to show me her new PJ's. You can also clearly see the scar from her port(Bertie) operation.






Take care all.

xx

Monday, 25 October 2010

It's a new day.

Firstly, I wish to express my heartfelt thanks to the overwhelming response I received on the last blog post.

It was unexpected but well needed and everyone of you in blog land rock!

Thank you.

On to business.

Plan of action is two weeks of clarithromycin to try and get baby Staph monster to vacate the party. I'm not going to get over excited, I've learnt the hard way it doesn't pay off to be over hopeful.

Don't get me wrong, my fight alongside Sophie is as strong as ever, more so in fact, but I have to stay level headed and realise that not all battles can be won with this disease. You do have to look at the bigger picture though, that's what counts.

It's about finding the balance. I've noticed I get burnt out emotionally after a while as I put all my energy into fighting whichever obstacle gets in our way at any given time.

This isn't healthy for me or Sophie.

So I have now realised I cannot control EVERYTHING. This is very hard for me to admit, I am somewhat of a control freak by nature, but admitting this finally may help us all out in the long run.

No longer am I going to waste emotional and physical energy on the uncontrollable, it would be better well spent going to Sophie and Ian, and used to enjoy all the brighter moments in life.

What is the point of fighting for life if it is never enjoyed?

Sophie has started on the saline but a very low dose, her team have decided to gradually increase the strength over a period of weeks. So far she loves it and it is also making her cough more up, which was the whole point of it.

Looking at how her body has responded to a very low dose, I am very excited as to the results we may see as the strength is increased.

Sophie will also be having a bronchoscopy finally.

We had been asking for well over a year if it would be beneficial and finally the team are on our page. They'd like to know what her mucous is like and the state of her lungs in general. Also good for taking lots of samples and getting a true picture of what lies beneath. The dates will be decided but it isn't an imminent procedure.

I am grateful that Sophie has always had a good cough and the ability to get stuff up and out when we need it for cultures.

We aren't treating her blindly, we don't have to wait for her to become ill to get treatment, and the bugs aren't generally allowed too much space to build up a whole colony as we give them a full on beating down because we know they are there.

This is something I am thankful for.

Sophie had her pre-school boosters and flu jab today, she was awful, fighting the nurses and I hadn't seen her this bad for some time, but as soon as we got out of the surgery she was fine. Thank goodness!

Weekly weigh in shows Sophie is still 16 kgs, so no weight loss at all since starting her tube wean!
Sophie is still trying a range of foods and is starting to bite into more and more things. All still going really well, which is unbelievable.


And,for all those parents out there who are having difficulty with their children and treatments here is a picture of Sophie doing her colomycin nebuliser.






It used to take both Ian and I to give her this. She used to fight and kick and scream. After just persevering, this is how she does this neb, every day.
Peaceful and calm, so don't give up, it DOES get easier :)




I'll leave you with a picture Sophie's nanny sent me, of Sophie in a tunnel at a park near where she lives. She loves being outside :)







Take care everyone!

xx

Friday, 22 October 2010

What lies beneath.

Invisible.

In the dark, deep depths of my daughters lungs.

I text Sophie's CF nurse today to find out when to pick up the prescription for the HTS and also to find out if the sputum sample had been more than just saliva.

Chest Xray had been reported and the great news is that the upper lobe collapse had resolved and had completely re inflated. Everything else looked normal but will be waiting on a full comparison of previous films to find out if there have been any significant changes.

CT scan may be considered.

The sputum culture was mostly saliva as expected, however some sputum had found its way out as we have results.

Mr pseudo was still enjoying his environment as he was his usual punctual self and still fully sensitive to all antibiotics.
Clearly he is so impressed with his habitat that he has now moved his wife in.

Mrs pseudo.

This is one lady who clearly wears the trousers as she is one tough cookie. Excuse my expletives but she is actually a bit of a bitch.

She is resistant to ciprofloxacin.

On reflection this isn't the first time we have met Mrs pseudo as she single handedly was responsible for the start of Sophie's triple whammy of IV antibiotics at the end of last year and beginning of this year.

This however, is the first time the two have put on a united front on the culture plate.

Now we are left with the realisation that Sophie cultures not one but two strains of pseudomonas.
I say strains lightly as they are both pseudomonas aeruginosa but are still two seperate entities.

You'd think they'd be content with taking over Sophie's lungs but clearly not as they have decided to adopt.

They are now the proud parents of a Staph baby.

You may remember Mr Staph making his debut a few blogs back and we thought he'd left quietly.

How wrong were we?

He's still very present and now this leads us to the question, what the hell do we do now?

Sophie's CF nurse is currently consulting with the pharmacist on dosing and will be in touch shortly.

Current options are..

Pseudomonas 1 and 2 will be left for the time being as not causing any bother and already covered with nebbed colomycin.

Staph will be hit with oral antibiotics. Either clarithromycin for 2 weeks or clindamycin for 4-6 weeks to try and eradicate it.

Or option 3.

2 weeks of clarithromycin, followed by a cough swab/sputum sample and if still present then 4-6 weeks of clindamycin.
If this all fails then 2 weeks of IV's will be on the cards.


So now we wait...


To see Sophie you would have no idea she has a family of bugs playing house inside her. She is symptom free. A great clinic appointment means nothing and all it does is teach you not to let your guard down for a minute.

So frustrating.

I'm tired of CF today. It's making me angry as I cannot do anything about it.

I hate that Ian and I have both got excited about starting a new nebulised treatment on our 3 year old daughter. In any other life it would be horrifying but in a CF life it's different.

It's a chance of improvement.

It's a chance of damage limitation.

It's a chance of prolonging Sophie's life by maybe a few years or more.

This is the reality of CF. This is living a life alongside CF.

This is our life with CF.



On the menu this week, fruit skewers.





Take care everyone.
xx

Tuesday, 19 October 2010

Clinic visit.

Today has been very interesting!

Ian and I got Sophie ready and off to clinic we went.
First was outpatients to see the whole CF team.

Height good.
Weight stable.

Sophie allowed the doctor to listen to her chest and that was nice and clear. On the whole, they have no concerns with Sophie as she looked really well. Brilliant.

Obviously we have the issue with the chronic pseudomonas but there isn't much that can be done about it as we have all bases covered. Just a case of hope and wait for someone to create something that will blast it away. Currently causing no issues that we can see.

Sophie's psychologist had spoken to all of the team just before our visit and had explained all of my concerns and feelings etc.

It worked, and worked well.

All of the doctors kept asking if we had anything to ask and when we enquired about trying Sophie on hypertonic saline (HTS), her consultant didn't even hesitate.

He said absolutely!

Yes you heard right, we will be able to try HTS as soon as the prescription is sorted and we can arrange to test it in a controlled environment to check for any reactions. Unsure of which strength she will start on as I think they will start on a lower strength and work up as needed and tolerated.

So happy. Just want to give Sophie every chance of easing her pseudo problem.

We were also handed an Xray card to try and get one done when she was sedated.
We were shown the Xray Sophie had done just after her port insertion. She had some upper lobe collapse which we were never told about.
The thought is the ivs she had would have corrected it and as she is clinically well then they aren't concerned but wanted this one done to absolutely rule it as reversed.

Off to the ward we went with Sophie's crew in tow (CF nurse and psychologist)and sedation was given on arrival, 20 minutes of play time with the nurses and we had a very drunken Sophie. Port flush was done with ease and instead of using emla cream they used the coolant spray, which we all feel will probably be better for Sophie instead of emla.

We then whizzed up to the xray department and were able to get a chest xray done however it was in surpine position (lying down) as there is absolutely no way Soph will sit up for one currently.

We weren't going to argue as at least we got a good one done!

So all in all a fantastic visit. Just need to wait on the sputum culture we took in but it may be bounced back as it was only a very tiny amount. If that is the case then we will need to get a cough swab sorted.

Hoping she grows nothing new and that her xray is clear.

As soon as we start the HTS will let you all know. We are also keeping her on her DNAse and although this means an extra two nebs per day, we don't mind if we get the results we are expecting.


We visited my dad and step mum and they had bought Sophie a small project. It was a felt reindeer hand puppet that Sophie had to stitch together and glue on the face pieces. She only needed help with the stitching and was left alone to glue the detail on. This was the end result!



How well did she do!!










Very proud...









Playing with some of the string..









Just wanted to say hello to Cheryl and Katey who are new to our blog and hope you both come back soon and also thanks to Gem and Stacey for all of your lovely comments. I really appreciate them and all comments from everyone else!


Ooooh nearly forgot to say, Sophie's weight is still 16kgs! Yay.
Sophie ate half of a pancake and a pot of yogurt at nursery yesterday. She's doing amazing and we are all really proud of how well she is doing, learning to eat.

Take care everyone.

xx

Friday, 15 October 2010

Light at the end of the tunnel.

Today we spent the morning at the outpatients department with Sophie's CF psychologist. Again to work on her anxiety with all things medical.

She did great!

We got her height done, 95cm and her weight was 16.22kgs (dressed and on hospital scales).

Sophie was able to navigate round the department and tell us exactly where certain procedures happen to her and which were her rooms. I'm so proud of how far she come and how much calmer she is.

She isn't completely there yet, still loads of work to do but the improvement is amazing.

We took a (long) walk down to the other hospital building to spend a little while on her CF ward and to meet up with her CF nurses.

Sophie spent the whole time playing in the outdoor area where everyone that came out to us, ended up riding round on bikes and scooters.

I wish I could have photographed them all but couldn't, I did manage to snap a few of Sophie though.










She managed to have a good run about and obviously some physio as she did have a good coughing session.
She was much more relaxed on the ward too so all in all, great visit today.

Sophie was also given a near complete version of her book that her psychology team have been working hard on. I must say it's great and Sophie is really interested in it.

Again I am limited as to what I can publish on here but in addition to some of the pictures I have blogged before, here are a few more. I highly recommend doing something like this for any little ones that are struggling with hospital visits.





Sophie happily getting onto the scales, all of the pages have some sort of caption on them.







This is Sophie having her cough swab done, had to cut out lots of faces out of this one!!





This is what Sophie's port looks like when accessed, here she is having her monthly flush done (Bertie's drink). The redness was caused by removing the sticky, clear dressing and isn't a reaction btw.





Off to Clinic on Tuesday and also port flush due. Will let you know how we get on.

Again thank you so much for your responses to my previous posts. I have taken everything said on board and am just going to be myself when it comes to asking questions. Lets see if we get anywhere with the hypertonic saline. I only want to trial it with her, just to see if it has the same effect as the sea air does.

Sophie's nearly completely back to normal after this virus and her antibiotics finish in a few days.

Fridays food fun.

Fruit bread.



Smiley cook.





Concentration is key you know :)






TaDa!





Take care all and have a lovely weekend.

xx

Tuesday, 12 October 2010

Weight update

Very short update from earlier (see previous blog post)

Sophie does indeed weigh 16 kgs!

Woohoo! My little porker has actually got some calories out of her tasters. Still very early days and a very long way to go but it's still fanbloodytastic :)

Even more so fab as she has been poorly.

Go Sophie.

x

Frustration or anxiety?

We are due at CF clinic on Tuesday. This time, Ian is coming with us so he can ask all the questions instead of me.

I still feel like I cant ask anything at the moment, despite the reassurance I can and wont be judged solely over my profession.

The main subject is the possibility of trying hypertonic saline. There are one or two other things but I will blog about those after clinic.

Again I must add that I hold all of Sophie's team in the highest regard, they are amazing.

I had a call from Sophie's CF psychologist today. We are meeting up on Friday to just have a fun day in outpatients and on the main site where her ward is. This is again to work on her hospital anxiety.

I honestly didn't think I was still feeling as bad about the whole nurse vs mum thing.

I am.

Soph's wonderful psychologist will be speaking to the whole team before clinic to try and explain my side of things and how I am feeling. Hopefully this will work and we can all move on and lower our defensive walls once and for all.

I cant decide where it all stemmed from. I guess it has been an accumulation of things, possibly misinterpretation from all parties too.
I also cant decide whether I am just totally frustrated that I cant control Sophie's CF or whether I am just completely anxious about the whole thing and that I probably know way too much.

Anybody have any ideas or thoughts?

Anybody feeling or felt like this?

I guess I'm just having a mummy wobble at the moment, doesn't help because both Sophie and I have been poorly. I'm finally on some antibiotics as I was actually coughing up stuff way more colourful than Sophie!

Nice ;)

Anyways, we are both feeling much better and thank you to everyone for your well wishes, really sweet and actually needed. You guys rock.

On the eating front, Sophie is still doing really well, I am so proud of her.

She's trying many different types of foods now and actually asking for things she will at least lick and she has also been biting into things.

Yes you heard right, BITING.

She ate nearly a whole cracker at nursery, her chewing technique needs some work but this girl is learning!

I did her weekly weight this morning but I am going to repeat it tonight only because that is the time I normally weigh her, so I want as true of a reading as I can get.

I will do a very small blog later to compare it to the one I got earlier.

Last week as you may remember she weighed 15.5kgs, this morning she weighed 16kgs!
I am not doing cartwheels just yet though, as I want to check as I cannot believe she has put on 0.5kgs in a week!



Random photo.


Another picture from Esme's christening. Sophie has no issue with dirty floors it would seem!




There will also be some interesting news over on our feeding problems blog later in the week so keep an eye out for that.

I have added a new page to the top of my blog about Sophie's daily treatment regime for anyone who may be interested in knowing what she does everyday.

So Friday we meet with the psychologist, and Tuesday it's CF clinic AND port flush.

Take care all.

xx

Friday, 8 October 2010

Feeling rough.

This Autumn has met us with one almighty bang, in fact more like a huge kick up the backside if I'm honest.

Sophie's cold has sort of shifted. I say 'sort of' as now her nose seems blocked and she's still producing an impressive sputum fountain off of her chest.

So hoping that these little lovelies will do the trick.









She's actually about five days into a two week course now but although she's not cough, cough, cough all the time, she's much more productive than I have seen her in a long time. Guess this viral bug has stirred up Mr pseudo from his slumber.

I'm still suffering from it too and I have to say I feel horrible, really tired and it's hit my sinuses like a ton of bricks. Thought we'd both recovered but it's come back with a vengeance.

Poor Sophie.

At least I can understand why she's being so grumpy and sleepy. Just hope it buggers off soon!


She's so pale at the moment except for when her cheeks are flushing due to this bug.
She managed to get to nursery today although more interested in the green bus that drove past as I took this picture!










She's Still taking small tasters of food and no major problems on the wean front still so nothing really to report, which is great news.




Enjoying what probably is the last of any decent weather for a few months!







Sophie's nanny has been spoiling her this week, she's bought her her own chefs outfit complete with hat, so cute.

I'll leave you with a few pictures of Sophie busy in her new outfit at her nanny's. Sorry for a short blog but I just want to go and sleep!




















She made some cakes and biscuits in the shape of people this week, delicious!


Take care everyone and speedy recoveries to all who need it.

xxx

Monday, 4 October 2010

Mmmmm!

Baked Beans and toast for breakfast.











This is what Sophie is constantly asking for at the moment. She doesn't chew the beans because she has absolutely no idea about the concept of chew and swallow when it comes to food.

This is something that we are going to have to teach her.

She likes to dip the toast in the sauce and suck it off the toast. On occasion she will put a few beans into her mouth and suck them and then spit them out.

All progress though and I cannot believe how well she is coping without nearly a quarter of her daily intake. No major tantrums yet, just asking for lots of things to try. She has also taken to sipping actimel yogurt drinks, some days she tries more than others but, hey, it all adds up and calories are good!!

Sophie's weight on our scales last week when she was having her full tube intake was 15.5kgs, and this week, her weight is...


15.5kgs!


So she has not lost anything which is awesome!!

This means that the little bits of things she has tried have actually added up!

Still a very long way to go though and weight loss is going to happen but for this first week, her weight has stayed stable and I am so happy :)

Go Sophie!


On the cold front, Sophie has started oral antibiotics today. She seems brighter in herself but her cough is wet and nasty sounding so hopefully 2 weeks of orals will help. We are at CF clinic the day after her antibiotics finish anyway and her port flush is also due.

I'm not worrying about a thing this time though, as Ian is coming with us to ask all the questions I want to, but as it will come from him I cant be accused of asking too much etc

I really want Sophie to try hypertonic saline.

When we were last on holiday right by the sea, for the first two days she coughed so much crap up off her chest it was almost worrying, but it soon settled and her chest sounded crystal clear. We initially thought she was having a flare up but then quickly realised that the sea air had actually given her a well needed clear out.

Two possible problems though,

1) Her consultant isn't a huge fan of hypertonic saline.

2) She is already on Pulmozyme/DNAse, which we had to fight for and it really has done a grand job of clearing out her nose/sinus's and we don't want it stopped. It just doesn't seem to work as well as the sea air clearly did (which was partly what made them develop HTS).

Her consultant doesn't want to add too many treaments but Ian and I would much rather put the time in now to prevent lung damage occuring sooner rather than later.

It's so hard, does anyone have any thoughts, experiences etc with hypertonic saline vs pulmozyme or use both?

Fore-warned is fore-armed.

Thanks for all of the well wishes, our boiler broke over the weekend and left us with no hot water or central heating! Timing is everything isn't it? but luckily Ians brother is a plumber and was able to do a patch up job for the time-being as he is going away so now we have a nice warm house again!

Sophie's injections have been postponed for 3 weeks to make sure she is well over this virus and off her antibiotics. She'll be getting her flu jab at the same time.

Take care and lots of mendy thoughts to all of you struggling at the moment.

Love to you all.

xx

Friday, 1 October 2010

Unwelcome guest.

Can you guess?



The weather has gotten colder...

The days are getting shorter...

The sun has been hidden by a sky full of darkness...



People are taking to their houses and only venturing out into the unknown for necessities, hoping that on those short journeys they wont cross paths with him.



We were not so lucky. Our paths clearly crossed unbeknown to us and now we have a very unwelcome house guest.



Mr cold virus.



Urgh.



Most people hate the viral season but to all in the CF community, it is a nightmare.
Thankfully I have a good stock of back up antibiotics in our cupboard, ready for action when needed.

I say when and not if as it is inevitable. Antibiotics will be needed this winter, I just hope it is only orals. You cannot escape the germs as people swan about the place when ill without a care or thought for anyone else around them.



It's only a cold you hear people say.



It may only be just a cold to you, but to those with CF, it could mean increased treatments to add to an already gruelling schedule or a hospital admission or two weeks of IV antibiotics if they're lucky it just stops at that.




Sophie doing her DNAse through her pari turbo boy neb. She was never keen on this particular nebuliser or treatment but she is slowly improving.












I hate the viral season.

Sophie isn't right, she's coughing a little more than normal, she's sneezing out impressive snot and grumpy at times. She's also got flushed cheeks but no temperature thankfully.

She's due all of her jabs on Monday and I'm hoping she can fight this off over the weekend. Not sure how this cold is going to go with her, as she always gets a lot of post nasal drip causing her to cough more. It's once that stops that we know if it has entered the lungs and caused a bacterial flare up.

If no better by Monday I will be speaking to the team, but for now we wait.

Sophie is continuing to try little bits of food, I'm going to do once weekly updates on the tube wean front, probably on a Monday. No problems so far but very very early days.


Apple.




Finally, Sophie's weekly cooking class!


Yummy Biscuits...















Take care and look after yourself and yours.

xxxx
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