Tuesday, 5 August 2014

Annual Review.

We were a little late sorting Sophies annual review as I had to reschedule her appointment.

All in all things are looking great!

Height and weight are steadily increasing and her chest sounds good.

Lung function left a little to the imagination because Sophie appears to have forgotten how to actually blow into the machine lol

We've worked so hard on getting her to take a big deep breath before actually blowing, that today, she took a huge breath and held it-bless her haha!

By the time she remembered to blow out it was really affecting her FEV1 result (the amount of air she can blow out in a second)

Consequently her FEV1 was 88%

Now this is still within normal range but we know it's a lot less for Sophie but aren't concerned as we know why it was down.

Her FVC (the amount of air her lungs hold) has gone up to 121%! Super happy with that!!!!

Cough swab and a tiny bit of sputum have been sent for culture so we will wait and hope nothing grows.
Interestingly, Sophie hasn't grown pseudomonas since last October. I fear I may have jinxed that now but I had to mention it.

All her bloods are normal except her vitamin D which is a little on the low side. Partly due to diet, partly due to her being fair skinned and having to wear loads of sun cream. We are gonna add a vitamin D supplement in to see if that helps.

We ran round to X-ray for her to have a quick chest X-ray done. She wasn't best pleased at having to wear a gown today!
But she was a star having the X-ray done.

She had a physio session and learnt a few techniques and we now have a new regime to try. So we will see how that goes and if it help her.

Only other things to note are a CT scan and a bronchoscopy in the near future.
CT scan because her last wasn't a great result as it was done under GA and the pics were rubbish & the bronch is to get a true picture of her current lung gunk and what delights are living down there.

I assume these may be done near her next IVs which will probably be done before the cold and virus season arrive. Watch this space.

It's currently the summer holidays so we have been busy on my days off having lots of fun and getting lots of exercise in.

Swimming continues and Sophie is starting her iceskating lessons in September-exciting!

We had a small bit of drama while Sophie was riding a roller coaster. We were just coming down a huge hill as a wasp flew in front of Sophie and stung her on the forehead! What are the chances eh?! Luckily she didn't react and a lovely first aid lady stuck something on it and covered it with a plaster. Didn't stop soph feeling sorry for herself for a little while though!

She was soon back smiling once the plaster came off. Couldn't even see the sting after a couple of hours thankfully.

I will leave things here for now. Just an small update today.

Take care


Monday, 23 June 2014

Lung function.

Well Sophie had her port flushed today and I'd asked her nurse if it would be possible to do a cheeky little lung function while we were there.

She said sure, and then asked why...

I then had to confess id stopped the hypertonic saline. I did have my reasons though!

Soph developed a viral thing and ended up on orals with a horrendous bark. A cough she's never really had before. Strained and very wheezy. No amount of ventolin was curbing it so I figured that we already had an inkling the saline was causing irritation so I basically culled it.

Since stopping, her wheezing has stopped, her breathlessness has gone and she no longer sounds like darth vadar!

So, port flush was done with exceptional ease. She just sits on my lap and doesn't really murmur now-it's incredible!

Prior to her port flush she did her lung function. Best of three.

Now if you remember her previous results were as follows-

FVC 100%
FEV1 85%

Today she blew-

FVC   119%
FEV1 106%

Happy, relieved and ecstatic!

Not quite her best but only a few percentage off and her technique is still a little dodgy but 20% increase isn't something to be sniffed at!!!


So clinic in a few weeks to discuss whether to try the 3% saline. I really want her to stick with some strength of saline as it's keeping her bacteria numbers well and truly nuked.

Normal flora isn't something we hear often and I'd like that to continue if we can find a dose she can tolerate.

Will see what the team think and go from there.

Here's a few pics!

Ice skating has become one of Sophs latest loves and she's definitely growing in confidence. Possibly going to start lessons in September-watch this space! She's already swimming twice a week currently.

Soph with daisy, taken the day after the two dogs decided to abscond from the garden and take themselves off on an adventure. Mass panic occurred but thankfully both were found safely!

Taken today in clinic. Soph found the youngest kids toy to play with. Doesn't mask the fact she's growing up far too quickly!!!

We are currently in the middle of a horrendous tummy bug at home, lasting so long but I seem to be on the home stretch and Sophie is now better. Wish the same could be said for Ian who is quite poorly at the moment! Hopefully be gone soon-10 days is a long time to have an upset tummy!

And on that note, thank you for the responses on my last blog post. Very helpful indeed!

Take care all


Tuesday, 13 May 2014

Clinic round up!

Clinic went well to be fair. Sophie is in great health at the minute so wasn't expecting anything to be too out of the ordinary.

Weight sitting stable at 17.8kg
Height up nearly a cm to 109.9cm
And 100% sats.

Sophie had already produced a sputum sample before we left home so I handed that in. Always makes me giggle when they tell Sophie it's time for her to cough on a stick. She looks at them quite disgruntled and says 'why, there's a blob in a pot here!'

We spent a fair bit of time waiting around today in our room, which we understand can happen if other patients need more input or turn up late.

Eventually Sophie got to do her lung function, this was the bit I was most curious about as it has been down the last few times.

Today it had gone up a little to...

FEV1 90%
FVC  107%

So definitely heading in the right direction but not quite at her usual norm.

Had a chat with her consultant and we both agree the hypertonic saline is the likely culprit for her LF dip so he devised a plan.

You know how I love a plan!

We are going to increase her ventolin inhaler to 6 puffs prior to nebbing the saline.

If we still notice her breathyness etc then we are gonna switch her from the ineb to her slower compressor, as it's likely the ineb is a little too powerful for her lungs to take the quick delivery of saline.

If this still doesn't fix the issue then they will drop her down to 3% saline, but would prefer to keep her at the 6% as it is working so well for her in terms of mucocilliary clearance.

Booked port flush for end of next week so I may see if we have time to sneak in a cheeky lung function while we are there.

Anyone have any words of wisdom re hypertonic saline? Anyone switched to 3% and still seen such good results? Better with a slower compressor?

Be really grateful of others input.

Take care all!


Monday, 12 May 2014

Parallel universe

Frustration, fear. Tears tumble down my cheeks. Uncertainty and driven into a world of experiences that freeze you to the core. Suffocating and choking on stats and risks. Holding onto a small amount of hope, hope of a future, any kind of future.

I've spent a few hours reading through this blog.

Reminiscing if it suits.

I'm a little taken aback as to how much I have forgotten or chosen to suppress. 

When Sophie was born, it was the most beautiful experience but we were soon catapulted into a crazy hellish reality.

Time stood still for a long time following her diagnosis of TOF/OA then sepsis, then Cystic Fibrosis, then reflux, then full blown oral aversion and her hospital induced anxiety.

Getting to grips with signing multiple surgical consent forms, passing NG tubes and getting used to a multitude of daily medications and treatments.

It was consuming, frightening and heartbreaking on so many levels. Living day by day seemed to be the only coping mechanism in this threatening catalyst.

However, what has dawned on me is how much things have changed. I mean hugely changed.
I have forgotten to a degree how I used to feel, how at times I'd cry with despair and worry.
Routines developed, Sophie overcame hurdle after hurdle and at times not just leaping but smashing through barriers.

People used to say things will get easier. I used to nod but inside I was screaming how would you know, how does anyone really know? But things have certainly changed.

I'd never say those people were right, does this kind of thing ever get easier really? However I do feel like the life we lead now is a complete parallel universe to the one I thought we would have at Sophies diagnoses.

Sophie is living and loving life and that's what she has taught us to do.

As a parent of a child with health problems it is so easy to become consumed by your child's illnesses. The harsh reality is, though it may be hard at times I really won't sugar coat that, but ultimately it is your child that has the illness, it's your child that lives with it daily, it's your child that endures the multiple hospital procedures. Not you.

And do you know what? My child does it all with a smile on her face (90% of the time) and that is a huge lesson to us as parents to take a leaf out of their book. Yes we will all have down days and dark moments but don't inflict that on our children when they deal with their illness with such ease.

None of this is about us.

We have chosen to see the world and ultimately our daughters illnesses through her eyes and our life is so much more fulfilled because of it.

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