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Throughout yesterday Daniel had improved, his oxygen requirenents were lower than it had been of late and he was generally a lot more settle. We popped out at teatime to collect Tom from nursery and drop him of at Julie’s brothers, Uncle Daz and aunty Denise’s. When got back we noticed that his head was bobbing which meant he was breathing himself which we didn’t think he should have been doing. Later in the evening he had a nasty turn. It started with his oxygen sats going down and they continued to go down evan while on 100% oxygen. They decided to tom thumb him to bring him back up but he was very very slow to come back. All we could do was just stare on helplessly watch as they tried to stabalise him again. This went on for almost 20 mins before he finally started to become more stable and was put back on the ventilator. It wasn’t long before he started again all the time his blood pressure and heart rate was coming down much lower than had been all day. So they went back to tom thumbing all the time we looked on helpless with no-one telling us anything or evan acknowledging that we were there. The doctor asked that the consultant be called, this was the man I spoke with regarding Daniels operation. When he arrived they had finished tom thumbing him but he was not improving, he told them that they needed to muscle relax him as his attempts to breathe during the evening had been the main cause and should be prevented for a while. Once he’d had the medication he then took the time to explain to us what had been happening and what he believed had been the cause of the problem. He really took the time to explain and listen to us despite being called out at midnight which we were really grateful for as for the last two hours we had been left in the dark. Throughtout the rest of the night he was very settled as he is now muscle relaxed before anything is done to him which has really helped.

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