April 17th, three years on 

April 17th was a difficult day, perhaps ironic since it was Good Friday. As we suspected Oscar had needed more assistance overnight and we arrived to find a very unhappy boy on a CPAP machine.
From what I remember, the mask over Oscar’s nose was pushing oxygen into his lungs and was supposed to be a step down from the ventilator. Despite how uncomfortable this looked, from what I understand it would have been a positive thing had Oscar been able to cope on CPAP and not have to be intubated again.

Oscar hated the CPAP machine. He was so unhappy on it, and that was difficult for me to watch. Until this point, despite what he had been through, he was mostly settled. If he did become unsettled, we were usually able to calm him quickly by talking to him and stroking his face. Those didn’t work this time, and the only option open to us was intubating him.

This may sound strange but I was actually so relieved once Oscar was back on the ventilator. He had to be sedated again for this to happen, and had to be given fluids. He also had to have his chest dressing changed again, as his crying and being unsettled had caused the wound to open slightly and leak (you can see the start of that in the top photo.) We weren’t allowed to stay while Oscar was being intubated, so were those parents sitting and waiting for news again. Sometimes I wonder if the not knowing what is going on is actually harder than if we were able to stay in the room while the procedure happened (and having been there at a “crisis point” I know how horrible that is.)

At the time I remember saying that maybe Oscar was so distressed because the CPAP machine involved him wearing a hat. I’ve said before how much he hated hats. Of course, we know now that CPAP and then breathing unaided long-term was never actually an option, but I do wonder if he would have been calmer on the CPAP without the hat piece attached. Perhaps the mask over his nose wasn’t what was actually bothering him, after all he was pretty used to the ventilator (I realise the two must feel different.)

You will see Oscar has the dummy back in the above picture, but hasn’t closed his mouth around it. This was how he liked to use it at this point. I would put it in his mouth, he would take a few sucks, then spit it out to this point. I assumed he didn’t want it and took it away. He would fuss then calm when I gave it back, then spit it back out to this position. Oscar’s way is obviously best again!

Oscar’s nurse wrote in his diary on April 17th night:

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