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Over the last few days Danny has been really unsettled and has been really sicky.  He has been vomitting quite regular and each time he is bringing up bile.  They are not too sure at this time what is causing it but they feel that it is being caused by the increase in his feeding so they are holding back on increasing it at the moment.  He has also been really unsettled and very niggly, now this could be down to his stomach being really upset or this could also be down to them weaning his drugs.  Danny has been on a lot of medication for a long time now; he has been on morphine, midazolam as well as a good few others but these two are the one’s he has been on the longest. So they have suggested that he could be getting upset as a result of  withdrawal as the medication has been reduced quite quickly so they are slowing down the weaning process to see if this helps. The tracheostomy nurse has been round round today and gave Julie a booklet about care for tracheostomy’s and children with them, she is due to return tomorrow. The gastroenterologist and the surgeon have been around today to try to come up with ways of getting milk and calories absorbed so that Daniel can grom so they can take away the lipid which is what has affected his liver. He also been really smiling today and yesterday which is great as these are his first smile so it shows he’s making progress in spite of everything else that he’s going through. The surgeon told me today that he has not been able to make contact with the surgeon at Kings College as he was on holiday last week however he will continue to try this week, our hope is then that the referral can be made and Daniel can move on.

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