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Danny has been to nana sue’s again today, we got a lift from the nice WRVS person. Both Tom and Danny have been on form all afternoon so it was nice when they both had a sleep at the same time. Dan just wanted to be on his feet all the time like normal and Tom just wanted to be next to him, he is quite protective of him which is nice because we thought he would be so much more jealous but he just loves having Dan home. So do we, I personally am so not stressed when I am away from the hospital with Dan. I don’t have to worry about the conversations I have or whether there will be a ‘mis-communication’. I have never had so many ‘mis-communications’ in my whole life than I have in the last year and PICU is the only place I have been where the customer is always wrong! Nana sue invited her friends in so they could see this miracle baby she has been raving about. They thought he was great.

I nearly had kittens when I first got to my aunty’s as Danny has rather thick secretions at the moment and I thought he was blocking his trachy but a nebuliser, a few pats and he was as right as rain.

There have been no developments about what happened at the weekend but we know the truth and when all said and done that is all that counts because when we leave that place we will never have to see this person again. I just hope their conscience is clear. It really bothers me when other staff are coming up to make sure we will not be taking him off his vent when we have done nothing wrong, especially when I said he won’t be coming off and asked for his peep to go back up. We have never compromised Daniels safety nor will we ever and have always took all the equipment on the check list. We trust these people to guide us with our child, to make the right choices with regard to his health and safety but with what happened last week with the peep and the swedish nose and with what happened at the weekend, well it just feels like they are not thinking their decisions through. When I asked for the peep to go down they should have said, not at the moment as he is spending time off, lets not push him but instead they said, “lets try him off for 2 hours”, to which I said no. We want to get out of that place so much but we will not do this at the expense of our child. We have come through too much with him to have him pushed beyonds his limits. Danny means the world to us, he is one in a million so we don’t take risks.

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