I went in this morning and Max had done very well overnight – only one episode of apnoea/ braddy. He had also pulled his gastric tube right out, so he had a new one put in. Kathryn (nurse) got me to hold him right away, and he was very good throughout. Stayed on CPAP, but hardly desated at all. He did wriggle a lot to start with, but settled for a while & went to sleep, before waking up and wriggling again. I held him for about 45 minutes all up. He is now in a big bed!! Quite an achievement – but he now looks tiny again.
Some discussion with doctors about this surgery (bowel resection). Today’s doc is keen to hold off on the surgery as he is concerned about the ventilation aspect of it all. Max would have to be re-intubated for the surgery, and he could end up taking a while to get back off it again, and therefore more lung damage. So, from a ‘definitely Monday’, we now have a ‘maybe not, maybe a month away’… Actually I was concerned about this ‘getting off the ventilator’ business, so maybe it’s worth giving Max a few more weeks to try and get off CPAP before they risk the anaesthesia. There was also talk (again) about maybe doing the hernia operation at the same time. I understand that there are so many risk factors involved in all these decisions that nothing is cut and dried, but it does make it a bit hard on us.
In the end, though, it all comes back to our original mantra – take it day by day. Remember - the only question to ask each morning should be “what’s happening today?”. These guys really are extremely good, so while we ask all the questions we can, and venture our own opinions, (which are taken into account), we welcome the team discussion and conferencing which occurs. It means different styles and opinions are aired and the balances weighed.
But, I left Max in good condition, nicely wrapped (though awake and a bit wriggly, in a nice way), and saturating well. A nice morning.
Some discussion with doctors about this surgery (bowel resection). Today’s doc is keen to hold off on the surgery as he is concerned about the ventilation aspect of it all. Max would have to be re-intubated for the surgery, and he could end up taking a while to get back off it again, and therefore more lung damage. So, from a ‘definitely Monday’, we now have a ‘maybe not, maybe a month away’… Actually I was concerned about this ‘getting off the ventilator’ business, so maybe it’s worth giving Max a few more weeks to try and get off CPAP before they risk the anaesthesia. There was also talk (again) about maybe doing the hernia operation at the same time. I understand that there are so many risk factors involved in all these decisions that nothing is cut and dried, but it does make it a bit hard on us.
In the end, though, it all comes back to our original mantra – take it day by day. Remember - the only question to ask each morning should be “what’s happening today?”. These guys really are extremely good, so while we ask all the questions we can, and venture our own opinions, (which are taken into account), we welcome the team discussion and conferencing which occurs. It means different styles and opinions are aired and the balances weighed.
But, I left Max in good condition, nicely wrapped (though awake and a bit wriggly, in a nice way), and saturating well. A nice morning.
Later - Mark went in after he finished work, and he also got a cuddle today. Max was put onto low-flow, and did very well - in 21% and saturating at high numbers (including 100%). He needed a bit of suction, so they put him back in the cot, but Mark left him still on low flow (at least 45 minutes when he left). We'll call later to see how long he lasted off CPAP.
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