On being blindsided with more end of life care directives

Gaaaaaaaaaaaah. I'm so sleep deprived. I did the midnight meds, was woken every half hour till 4am when Kai's o2 dipped before they gave oxygen and then awake at 6am for more meds. 

Not the best state to be blindsided about end of life care directives for Kai.

Which is to say I was asked, in my super sleep deprived state, without Sam, to reconsider our end of life plan to include, in this instance, invasive ventilation if Kai needs it. That right there opens a whole can of worms. We spent so many hours and tears and hand wringing to agree on our end of life care directive. We talked about quality of death and quality of life. For us, for Kai. And Sam and I together agreed no ventilation. No vent, no c-pap. 

If it's stupid rhinovirus that is going to take Kai, and not NKH, do we still let him go? Or do we fight it with a vent, and hope it doesn't do too much damage to Kai's lungs ad bring it the end about later?  When is the best time to say gbye? To even consider it? I hate that it’s a thing. I hate that we have an end of care directive at all. I hate that I’m being asked to think about end of life with a run of the mill every day *cold*. 

It brings up a whole conversation about how much intervention is too much intervention. As an example: We could go home with an o2 monitor and oxygen. Kai will eventually need an o2 monitor and oxygen as his disorder deteriorates - NKH (or rather low tone) is not nice on lungs that have to work harder to compensate. But because this is not NKH related, we have to hang out at the hospital. On a ward where the bed could be used for someone else, and we could be more comfortable and more easily managed at home. O2… it’s just a little nasal cannula. He’s on it right now. Breathing a tiny tiny amount of air (0.5L - minuscule amounts!). And I wonder right now whether this is going a little bit too far with intervention - is it kinder to help? Or not help?

Is a little nasal cannula okay? With a small amount of oxygen? There are half a dozen steps from that to invasive ventilation, but where is the line? How do you know? I hate that we're being asked this over a stupid cold.  Because that's all it is - Kai has a regular little cold and it's horrific that our medical team just casually mention changing our carefully, painfully, with much tears end of life care directive it like it's no big deal. Had a quick call with palliative, Elly. What do you think about a quick round of horrifically invasive ventilation if Kai needs it?

I felt completely blindsided. In my severely sleep deprived state I burst into tears and said I couldn't have that conversation without Sam. I hate crying in front of the team. It changes the way they see you. I go from being medical expert in Kai to hysterical mother and suddenly the tone changes and they're all gently gently. Condescending, talking at me rather than to me. Making decisions for me, and for Kai. It's horrific. 

How can they ever understand what it means to talk about the death of your child? To casually bring it up like it's no big deal?

Sam and I spent hours and hours deliberating what end of life for Kai may look like for our little family. For quality of death, versus quality of life. I have cried countless tears, I have hugged Kai close when he's well, and sobbed when he's suffered. Every day I wonder if we've made the right choices. About the interventions we make daily. Every day I wonder whether we're doing too much or too little. Whether the decisions we've made are the right ones for Kai. 

For our community nurse to question our end of life decisions for Kai with such a blasé attitude, and in front of a room full of strangers? Devastating. I can't believe she could have been so unthinking, so unsympathetic. 

I hate being in hospital. I hate it.