Sticking points to come…

I can tell that Anne could have a couple of fights on her hand on Tuesday.

They will almost certainly try again to force Phil to take a pre-anaesthetic ‘sedative’. The problem with it is that it can have psychotic side-effects. And on each occasion Phil has had it, it has horribly violent psychotic effects on him, including him having terrifying hallucinations. We successfully put our foot down for yesterday’s operation, and Phil was wonderfully calm and relaxed going into the operation and anaesthetic room, proving there was no need for it – much less any justification for provoking such appalling suffering on our son.

I am also fearful there may be a renewed battle over Anne’s presence in the recovery room when Phil is coming round. Initially Great Ormond Street rules it out. After persisting, and with the support of a Member of Parliament (and recovery room staff), they relented and agreed she could be there to reassure him as soon as he starts waking up. However the consultants on duty next week are different ones, and I am sure Anne will find herself having to fight this one all over again.

Why does Great Ormond Street persist in trying to hinder rather than help, and make what is already a stressful situation unnecessarily distressing for children and families?

‘The child first and always’, reads the GOSH motto. No. ‘Doctor knows best always’, it seems.

Goodbye Chris

We’ve moved into the hospital’s family accommodation. I brought over the last few bits from our London flat which we’ll need with us over the next 6 weeks or so.

In a few minutes, I’ll be leaving here with Chris, Phil’s twin brother, to take him to his ‘new family’. He is understandably anxious and upset at having to go away. He is particularly worried at the ‘blackout’ on Tuesday, the day of Phil’s transplant operation, when obviously neither I nor Anne will be able to pick up the phone to him.

He is staying with a wonderful cousin who I know will take very good care of him and keep him occupied and amused the entire time he is away. But it is nevertheless going to be heartbreaking to say goodbye to him, and I know he will find it incredibly hard to be so far away.

The day when we can be all reunited will truly be a joyous one.