Still home. Still sick.

Apologies to anyone who read the last post and worried. We are still home. Saturday was awful (I can’t quite explain how utterly heartbreaking it is to watch your child cough (and be sick) again and again and again, day and night. To have nothing to soothe their rib pain, the head pounding, the sore throat...) but Isaac stood his ground in light of his many many previous experiences in A&E, and insisted we wait before going in. Credit to him, he knows his mind and body, and Sunday he was coughing a little less, and so by then it seemed best to wait for Monday to be reviewed by his own doctors. 

But come this morning (Monday) we were told the soonest he could be seen would be tomorrow anyway. The inn is full. The wards are packed, and after talking to his new CF nurse it sounds like our only way to be seen by a respiratory doctor in future is on clinic days (Tuesdays and Thursdays) or through A&E. This is new and miserable news for us; we used to be able to call any time Mon-Fri and one of his team would always be able to fit in a review if he was unwell. So short of fitting his disease around clinic days, we need to sit on symptoms or brave the contagious in A&E from now on. 

I’m sorry, I’m tired, I’m angry; I’m not blaming anyone, but I’m sad (and mad) at the state of our beloved NHS. 

Clinic first thing tomorrow.