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Conor James Foundation Trust 

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DAY 12 – 3 November

Michelle: A numbers man to his heart and soul, Michael read Conor’s chart. He took comfort in the fact that the numbers showed he was stable and doing okish. His ventilator setting was low-ish (as in he was taking some breaths on his own) and the meds seemed to be working. He was diagnosed with left ventricular infarction, myocarditis and cardiogenic shock. The plan was to give him medication to help his heart work like it should, and hope he would recover.


The thing is, because this was so rare in newborns, there was little information to go on in terms of treatment options. There had only been a handful of other cases of neonatal myocarditis reported around the world. Added to that, with newborns, you never know what will happen; they can recover remarkably well, or deteriorate rapidly. So, it was a waiting game, my absolute worst.


All we could do was expect the worst and hope for the best. I started a new routine of phoning the hospital on going to sleep and again on waking to check in and see how our boy was doing. I just wanted to hold him, and they promised me I would be able to when he came off the ventilator. There was hardly any part of him that we could touch as he was hooked up to so many monitoring cables, ventilator pipes and medication lines.


Michael: He is hooked up to hundreds of tubes and lines. A horrible sight. A breathing tube for the ventilator to take pressure off his lungs, one for food, and about 6 different meds being pumped in to one line entering his frail little body. One looses track of what goes in where and what does what. That is what the doctors know and check.


I look at the charts and see steady lines, that is all that I need to see that things are not deteriorating. At least it is not worse we tell ourselves. You start holding on to every little bit of positive, anything less than that you’d drive yourself mad with worry!