Monday, 29 August 2011

Seeing red.

We had quite the scare last week.

Sophie continues to be unwell, coughing although not the meaty kind of cough we associate with typical infections. She's sleepy and grouchy and just generally not herself at all.

One night she woke up having a crazy coughing fit, she was calling for us so I ran upstairs to her. She must have coughed for a good ten minutes with no let up and bringing up lots of clear sputum.

Then I saw blood :(

Two of her blobs of sputum had lots of streaks of blood running throughout. The logical side of me knew she had probably aggravated her throat with the coughing fit and a small vessel had most likely ruptured. The crazy mum side of me panicked slightly and it has left me with a small pit of fear in my stomach.

Is Sophie likely to suffer with lung bleeds?

No one knows the answer to this but the idea of haemoptysis is one of the sides of CF that chills me to the bone.
Sophie has such a forced, extreme cough due to her TOF repair and this could mean that statistically she has a higher chance of suffering bleeds. I guess only time will tell.

Fortunately there has been nothing further and after speaking to her CF nurse we tried one treatment, which caused no further occurrence of the red stuff. So it's safe to say that this time it was almost certainly a one off and the coughing had been the aggrevater.

She's a week into her oral antibiotics now and I'm not convinced they are helping her much at the moment.
Her cough is no worse and her temperatures have stabilised but it's her lack of energy that is the concern. She can manage a few hours where she seems her normal self but then crashes on the floor and sleeps for several hours.

Sophie never sleeps in the day unless she is poorly and the amount she is sleeping at the moment is totally off the norm for her.

We have a full CF clinic tomorrow so will see what her team think. She also has her port flush so will be a long day for her. I just want to get her sorted as she starts full time school next week and it would be awful for her to miss any of it. Seems a long time for a virus to linger?

Currently this is how Sophie is spending the majority of her days...

Wakes up for a treatment and then crashes again.

I will keep you all posted and thank you so much for the positive thoughts and vibes for Soph. I'm hoping to report much more positive news next post.

One can only hope.


Tuesday, 23 August 2011

There's always a sting in the tail.

Oh hi there!

I had absolutely no intention of leaving it so long between blog posts but a big thank you to those of you who have been in touch to check we are okay.

We have been enjoying the summer holidays as much as possible as they are flying by so quickly. Sophie starts full-time school September so not long to go now.

It's been a little bit manic round here the last week or so, Ian had his knee surgery and unfortunately there was much more damage than first thought. Rather than been up and about after a week, he is faced with not been allowed to stand on his right leg for 4-6 weeks!!
So that means crutches, no driving, and the inability to pretty much not be able to anything. He cant stand up (or should I say balance) for long enough to be able to make drinks, care for Soph etc so it's been interesting.

I've had to juggle babysitters for both Ian and Soph so I could go to work. I did leave Ian alone while I did a short six hour shift at work and my mum stopped by to check on him to find he had had to stand/wobble in the kitchen to drink a drink as he couldn't carry it anywhere :)

He has managed to adapt more now so it's not so hectic. The pain he was in was quite severe so he spent a good few days at my dads and Soph was at her nans.
I've basically had two kids with lots of extra needs to look after and juggle full-time work. It's been, well...interesting!

Things have settled now as Ian is able to get about a lot more, I'm sure cabin fever is going to set in some time soon though!

He's been going in and out of the shop to pick up bits and pieces but that hasn't gone without trouble. Obviously on crutches he doesn't have free hands to carry anything so he improvised and put his coffee and a bottle of water into his pockets to walk to the counter.
Unfortunately, a do gooder type clocked him before he could get to the counter as he takes ages and alerted the shop keeper that she should keep an eye on him as he was shop lifting :D

In hindsight I can see how it must have looked but what else was he supposed to do? Luckily our local shop know him and know he is very honest and laughed about it, but he really could have been arrested :D

Soph and I have been out and about enjoying ourselves, a small selection of photos from some of her summer fun...

Mmmmmm ice cream...

Ahh well, she did eat some!!

Silly dress up...

Fun on a giant bouncy castle...

The goat that fell in love with Soph...

How on earth does this thing work?

I think I'm getting it now...

Oh yes, result!!!

More quality time with the goat :)

Sophie's picture of me :D

She really was very proud of it, and to be fair so was I.

Look at my oral phobic little girl go with her toothbrush!!!!

She has hugely improved with this...

She has been super well for the summer and it has been a huge relief, however things have changed. Last night she had her first temperature in 3 1/2 years, a whopping 39.5 C!

She had been a little grouchy for a day or so but my brother got married Friday and we put it down to her being tired from all the goings on but we were wrong.
Her eyes started to look heavy and she became very productive.

Not a great quality picture but just look at how unwell she looks...

She has started oral antibiotics this morning and luckily she is at her CF clinic a week today and they will review her then. She'll be having her port flush done then too.

Her temp is being controlled with Calpol and it seems to be helping her mood as she hates being hot at the best of times.
Super sputum Soph is back and I'm gutted but hopeful it wont last long.
Please send her some feel good vibes that this passes without needing any IV intervention.

I wished I could end on a more positive note but I guess this is life with CF, UNPREDICTABLE.

I really hope everyone is doing good at the moment, I'll be checking in on you all later.

Take care


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