The wife and I have been doing our best to carry on as normal and especially not to get upset in front of the boy. That can be hard as she's with him all day. But work for me has been difficult. Had a teary moment in the park on Monday and Tuesday lunchtime. It rather crept up on me. I had done reasonably well at supressing everything pending Thursday. But got caught out and overwhelmed by the enormity of the situation, of thoughts of his suffering death and where that would leave us. Not really what you want when you're trying to buy a sandwich.
He is still on oxygen. It has been approaching 4 weeks now since the original infection. The few hours off oxygen on Sunday did not last. And his oxygen needs are back above what they were previously. His secretions have been very wet again, which hasn't helped. Respiratory finally came in the afternoon. Renewed talk of ventilators and even moving ward, which fill us with fear. Instead we have increased his cuff to maximum and increased his hiocene patch dose. That is holding for the moment.
Meanwhile, he has carried on as before. Too much television watching interspersed with playing. He is very cheerful except when his cuff is deflated and inflated, when he cries soundlessly and pitifully. He pleads for it not to be put up, waving his hand no and pointing down. We try to explain but it always brings a lump to my throat.
He has become more bossy since being in bed for so long. When I arrived from work he asked if I wanted coffee? I said no. He shook his head again, repating the question while nodding. Eventually, I say yes. He is pleased and then waves at Mummy to go and make it for me and to make herself a tea whilst she's at it.
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