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So what has the last couple of days had in store for little Danny. Well there is still no news on when he will be going down to London, the surgeon at Nottingham has been trying to contact his counterpart in London but he is away at the minute so contact has yet to be established. Daniel in himself was quite good for most of the day but during late afternoon he started to have couple of his episodes.  These were made up of dropping his heart rate and having a desat, this meant he required “bagging”, the equivelent of “tom thumb” from the neonatal unit, to bring him back up. He was just finishing off his second episode when Tom and I arrived.  When I walked up to his bed I knew something was wrong as there was a number of doctors & nurses around his bed and Julie was crying. I asked Julie what was wrong and she didn’t answer, one of the doctors turned to me so I asked him what was happening and he replied “just a couple of near death experiences”. That was definately not was I was expecting to hear and certainly not so flippently, lets face it we now how serious his condition is without comments like that.  He then asked if we wanted to discuss what had happened and while Julie didn’t want to go I went to hear what he had to say about Daniel’s current position. He discussed Daniel’s floppy airways and how CPAP provides continuous pressure to ensure that his airways are kept open and do not collapse. But when Danny gets cross or upset the he tightens his chest and when that happens this increses the pressure in his lungs to a value greater than the CPAP ventilator is generating and thats when his airways collapse. When I returned I spoke to Julie about what happened, she told me that she’d got so upset not because of Daniel but because the same doctor was making the same kind of comments while he was bagging him. Later that evening we spoke to the nurse who was lookng after Danny and also the consultant that was on about what had been said earlier and how it had upset up.  Today the genetics team visited and were asking more questions but as yet they are not able to offer up a reason for Daniel’s problems. However, thats all for now as I am falling asleep so I need to get some sleep but well keeo you all updated as and when they happen.

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