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.

xxx