On PICU and hard decisions

It's depressing how familiar PICU is. The alarms are familiar. I knew exactly what they were the moment I walked in, a ventilator with likely low O2 stats, an finished infusion.

This PICU is nice. We have a large bay to ourselves (made larger because it's designed for a young adult sized bed, rather than a little Mikaere sized incubator. It's all open and airy and all the equipment is shiny and clever.

They also have beds. The boys sleep elsewhere on the ward but the ladies can sleep opposite the unit.

It's nice. And we have a lovely nurse and it's all 1-1.

It's just... The Fear has escalated as the measures we've gone through to stop the seizures are many, and to end up in the PICU feels like a kick to the face.

Kai is maxed out on so many of his meds. We're moving from oral to intravenous and we just, we can't get ontop of these seizures. 

Every Consultant keeps asking about ventilation and whether we want to go down that route if necessary. What they're really asking is what kind of quality of life would that be if he lived and couldn't get off the vent. Also, quality of death. If he's to die regardless of outcome then it doing it without being intubated would be better.

I can't believe we're thinking about his quality of death. He's only 11 weeks old. I don't want to be making decisions about his death.

I can't believe we're here. Hopefully, he won't need to be intubated and we won't need to make those kind of decisions.

C'mon baby. Please pull through.

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