Theo's ventilation was increased a lot at the end of last week. This was down to fluid gathering again on his lungs - very disappointing as it indicated the chylothorax was back. Over the weekend his lungs have drained a lot of fluid but with the increase in ventilation he is once again stable. The fluid has not been confirmed as chyle but is still a significant problem as it means the chest drains stay in and he is once again nil by mouth.

There is no improvement to report but there are small changes in medication; in order to reduce the number of entry sites on his body and therefore reduce infection vulnerability, intravenous infusions of drugs are being replaced with oral doses. The change of morphine left him very distressed and that has been reinstated intravenously.

My mum came to visit today (Sunday) and was honestly shocked by the amount of 'invasive intervention', Theo is experiencing. She remarked that even from the explicit descriptions and photographs we put on the blog, it is difficult to envisage how ill Theo actually is in 'real life'. I personally want to reiterate that Theo's life still hangs in the balance. This does not make me morbid or depressed - just capable of being honest. Willow.

Anyone got any good books?