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Conor James Foundation Trust 

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DAY 22 – 13 November:

Michelle: Again, I have no words for the heartbreak that I feel every time I see his little body just lying there, hooked up to even more machines. There is no improvement yet another ultrasound shows. The doctors had been hoping for some sign of positive change by now, but they tell us it’s also early days still, so there is a chance. But ECMO can only be given for a maximum of two weeks. Each day the update is a mix of good and bad, but we take whatever good we can and try and wish away the bad. And so, we visit, talk to Conor and stroke his head three times a day and try and stay sane.


Michael: Every day is taken in small increments, our focus on Rachel in the mornings, getting her ready and dropping her off at school. We wonder how she is handling all of this, she is not even two years old yet. Then off to hospital, say hello to our boy, and if lucky get to chat to the doctor on duty. Home, fetch Rachel from school, lunch. It’s amazing how one completely forgets to eat in these times, so having Rachel to focus on is also our saviour. The in-laws come to look after her as we go back for the afternoon visit. Following the dinner, bath and bed routine, the in-laws again come in case Rachel wakes up as we go for the evening visit. Every day just blending into the next. But every day that doesn’t get worse is a victory.