100 Days old

This morning we spoke with the consultant on duty to discuss what our wishes were with regard to Daniel’s further treatment.  We explained that we wanted him to be transferred and treated at GOSH as we feel that given Danny’s rare conditions that he would be better treated there, this combined with our recent experience with on the Neonatal unit at the Queens we feel that Daniel’s need’s will be better fulfilled at one of the top peodiatric hospitals in Britain. While he did not feel that his departure to London was necessary at this time he did understand what we were saying and this process would be put into motion and we will be notified as soon as the arrangements are made.  While this is not going to be cheap arrangement, what with my traveling down to London each weekend, congestion charges etc these are very necessary steps that we have to take so that Danny can get the best treatment possible.  As for little Dan his day has been a little unsettled again and when he’s awake he just looks so naffed off with the while thing but then so would I if I had spent my first 100 days in hospital with a large part of it on a ventilator.  So here we are very tired, knowing that we still have a very long road ahead of us; waiting to be told when we are moving.  Although one of the parents on the ward has been told that their transfer to Queens will be done early tomorrow as a baby is being transferred to London.  Strange coincidence but surely this can’t be Danny as we would know about this by now plus we have not arranged any childcare for Tomas yet as we don’t know when it happening. But then given recent experiences and having to re-arrange things around doctors nothing would really surprise me anymore.