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 diagnosis.

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.


Saturday, 10 May 2014

A return of sorts.

Well after taking a little over a year off from blogging I feel it's time to make a return of sorts. I say of sorts because life is hectic. I can't promise to a set amount of blogs per week but I can promise insights and updates more frequently than they have been.

For those that have checked on how we are thank you! It's given me the kick up the backside needed to get back to this old friend and clean off the dust in here.

For those of you thinking we haven't disappeared, that'll be because you follow me on twitter where I have been living for the last 12 months.

I guess the simple thing to do will be an update on Sophie. Things have progressed, some good some bad. So sit back, grab a snack or a brew while I begin to highlight the last year or so in a bite sized chunk.

Following on from the last blog post you'll remember we had seemed to eradicate MRSA. Well this lasted about 8 months and it ended up returning twice. Both times we tried the nebulised vancomycin.

Madam Nebulising vanc at school.

Well it seemed to work and Sophie began her pseudo maintenance IVs in the winter only for MRSA to be cultured straight after. This was a major 'oh crap' moment. We then had to sit down with the team and decide what the next plan of action was going to be as we had already had numerous attempts at getting rid of this staph bitch. I will return to this shortly.

In 2013, Sophie turned 6 which meant she got to start PFTs (lung function) baby!
To our surprise, Sophie took to this like a natural pro and we have been able to use the results as a likely definite of how her lungs are behaving.

She has consistently blown these absolutely awesome results.

FEV1 110%
FVC  124%

To say we were happy was an understatement!

Look at my big girl!!

PFTs are now her favourite part of clinic!!

We have also had a new addition to the family in the form of our new fur baby Daisy! Shih tzu number 2!
Fortunately she and Alfie get on incredibly well and he is so patient with her sassy, bossy puppy behaviour.

Meet Daisy (doo doo)

She is unbelievably naughty at times but you can't help fall in love with her :)

To bring us into 2014 and to return to the MRSA saga, we met with the team and collectively made a decision. Basically we decided to throw everything at it. We planned to do 2 weeks of IVs, 5 days of nebulised vanc and then 6 weeks of oral septrin and clarithromycin. So if you're keeping count, that's 9 weeks of treatment to nuke the staph bitch!

So Sophie was admitted and started two weeks of IV linezolid and IV vancomycin. 

Whilst in, it was also (finally) agreed that Sophie could do a trial of hypertonic saline Nebs. After a slight wobble and being told she may not even go home with it, followed by mummy having a frustrated meltdown, it was agreed she would trial it for a month. 

The trial went incredibly well, no audible wheeze or change in oxygen saturation levels and Sophie 3/4 filled a sputum pot! As I love you guys I'll spare you the picture of that one :D

IVs didn't seem to be causing any issues so we were allowed to finish them at home. So we left hospital with this...

And Sophies trial of 6% nebulised saline solution.

The IVs were slightly gruelling as Sophie was connected to an IV pump for 2 hours at a time, 3 times per day but it was worth it to be at home.

The IVs. This is the Vancomycin drawn up and ready to infuse.

And this is the linezolid all ready to go.

As awesome as it was to be home, it  wasn't all bad in hospital though as Sophie got to do a lot of painting and actually had quite a lot of fun.

Once the IVs were finished Sophie started the nebulised vanc which she had 4 times per day for 5 days.

Just before her initial test dose she did her lung function and unfortunately it had taken a nose dive.

FEV1 81%
FVC  85%

We hoped it was an anomaly and said we would see what next ones were like.

Nebbing the vanc at school again!

Once the Nebs had finished soph started her 6 weeks of oral antibiotics and they have just completed as I type this :)

Currently we have had two culture results of normal flora only. I'm not getting excited but being cautiously optimistic.

Unfortunately due to the combo of drugs Soph has had she's developed quite severe photosensitivity to the sun and is burning even on cloudy days so she's currently being plastered in factor 50 sun cream whenever she leaves the house. Hoping this will settle as the drugs leave her system!

We've also quite recently had Sophies birthday. I cannot believe my little tiny baby girl has turned...

Super scary, she's growing up so fast!!

Her most recent lung function was

FEV1 85%
FVC  100%

So an increase but possibly indicative of an asthma component likely brought on by the hypertonic saline introduction. We are giving salbutamol before each dose and in between if Sophie sounds tight or raspy.

We have clinic next week and will see what her lung function is like then and take it from there.

So until then I will say goodbye!

Just a short update from me ;)

Take care all, glad to be back!

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