20 January

Day 60!!! Max is reasonably good in his ventilation, though he still splints a lot. Oxygen is at 28-40%, suction is being done every 90-120 minutes, but the product is less thick than before.
BUT – there is a new rash on his torso front and back and on his legs. It could be something related to the central line again, or it could be a heart infection. So, more antibiotics, more time on the ventilator. The other infection seems to be (was) in his lungs – according to one of the culture results.

He’s really behind in getting this breathing right. Should be on CPAP by now. He’s still underweight, and it took such a lot to get him to this stage.

What now? I‘m drained. I have faith, and have always said “Thy will be done”, but I did hope that the guidance I’ve been receiving was showing Max to be one who will live. Is this a bump in the road? Will he just be a late CPAP-er? Will he gain weight slowly but steadily? Is this it?

Back to my favourite quote, the one I live by (as well as “Thy will be done”):
“This, too, shall pass.”