yesterday things were looking ok statistics wise and i was on even keel emotionally until one of the intensivists gently introduced 'quality of life' and 'long term plans' into the conversation, prompting horror upon my part about needing to withdraw care, which is still a very real scenario. This also prompted my introduction to the diazepam my dr prescribed for acute anxiety.
The truth is that no matter how many minor infections he can fight off, his heart will not support his life if he were not in intensive care with thousands of pounds worth of drugs being pumped into him every minute of the day.
It hurts terribly to think about it but we all need to be realistic about what Theo is going through and if his heart does not begin to improve, what kind of life he is having.

However we have not been approached as of today and therefore I can tell you that his lungs have not drained any more fluid which means the dr's are happy to reintroduce special milk formula monogen (mine still goes in the freezer). This is a nice thought - for the last 3 weeks he's been on the total parenteral nutrition - a kind of human need soup - through his veins. also the possible removal of the chest drains which means cuddles are more simple. though not straightforward in the least.

on the downside, he has had another fever in the night and his heart rate and breathing rate are very high again - they have sedated him again with fentanyl.

Willow