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Yesterday saw Daniel taken off the ventilator in the morning only to be returned back to it again after 12hrs. This was due to him not being able to cope with it as he is really only just starting to come out from all of the infections that he has had. While he was off it he also had a large vomit of old blood which is believed to have been due to his stomach bleeding. This is thought to be on account of him not being fed for a while as well as the excess acid that he gets. By the end of the day he was just plain knackered and it was a great relief to see him returned to the ventilator where he could just rest which is what he really needs. However, today brought us the surgeons. They were due to come over to see us between 5 – 6pm, so I arranged for Tom to stay at Sue’s so I could go and see what they had to say. At 3pm I got a call from Jules to say the surgeon was there to see us but obviously I couldn’t go as I was working, so she had to meet with them alone.
She called me a little later to say that they wanted to do the jejunoscopy which would mean a tube inserted surgically into his intestine allowing them to feed past his stomach. They want to do this as he is currently suffering from liver disease as he is not feeding on milk but is getting all his nutrients from the TPN. They told her that the plan is to take him over to the other hospital tomorrow and do the operation on Thursday and that he would be there for 7 – 10 days. At this Julie burst into tears as we have told them that we don’t want him to go but if he must then it should be for the minimum time possible, these feelings seem to have been ignored in all of this. When I got to the hospital later on the people I needed to speak to had left for the say so I spoke with the registrar and expressed our concerns and told him that we felt our wishes were being ignored in all of this. Now we do understand that Danny needs this operation, we also want him to have it but it just feels like we are unwanted baggage that to be quite frank is being ignored. This is not the way you want to feel when you have all of this to deal with. Suffice as to say the registrar is going to arrange for us both to speak to the surgeons tomorrow and I will also be contact London to get their thoughts.

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