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Conor James Foundation Trust 

IT000501/2018(G)

PBO number: 930065044

NPO number: 226-532

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DAY 14 – 5 November

Michelle: The cardiologist did another scan today. It looked as if there was a very minor improvement in Conor’s heart functionality. Ever cautious, the cardiologist noted that it was “nothing to write home about”. The doctors remained guardedly optimistic that he had a fighting chance.


While the anxiety remained, hope bloomed. Conor was sedated and would remain so, but he would wake every now and then.


Possibly one of the most traumatic memories for both Michael and myself is when he was crying. The crying was silent however due to the ventilator pipe in his throat. It was heart-breaking to watch my baby cry and not be able to do anything motherly about it, like cuddle him and love him. All I could do was stroke his head and tell him it would all be ok, even though I didn’t fully believe it would be.


Michael: I spoke previously about keeping a routine going, this has not changed, just the routine itself has changed. This hospital has very limited visited hours, understandable being a specialist CTICU. We cram in everything else in the time in between, as we have an hour in the morning, an hour in the afternoon and half an hour at night.


You start recognising faces of other parents that have their kids in CTICU. You don’t realise it until so much later, how brave everybody is. The routine of washing hands, then using antibacterial gel (a smell you never forget).


The latest scan shows an improvement, the first sign of something going the right way. We cling onto that, although we are reminded that he not out of the woods by any means, but an improvement nevertheless.