On being in hospice

We've been at hospice almost a week now, and I struggle to organise my thoughts in a manner appropriate for sharing.

It's quiet at hospice. Slower. We have a room next to his (and a small set of rooms upstairs, too, so Sam can work and grandparents stay). Our rooms look out into the garden and it's all very sedate. There's a quiet routine here, and we've slipped into it.

The quiet is disarming. Before at the hospital everything happened so quickly, we were living on adrenaline and reacting to whatever came our way. It's harder here - the slow sedate waiting to see what Mikaere does is difficult. It's given us time and space and all of the emotions from the last three weeks have caught up with us. I'm exhausted. There is a lot of quiet private crying as we process.

Very very different to the hospital, with all the beeping and alarms and people. I'm not sure how I feel about the move. If we were home and he was well, it would be loud. Crying and music and normality.

There is no hiding in the noise or busy-ness that was the hospital like we were. There aren't any monitors here, which threw me for a bit. We used his heart rate and O2 stats to understand what was seizure and what was not. We had a portable one here but it was never accurate so we took it off, taking our readings from Kai instead. We don't buzz the nurses anymore. We quietly pad out into the hall and poke our heads into their offices to let them know he's x minutes into what could be a seizure. It's hard to tell what is and isn't. Regardless - they give him a bolus anyway.

Part of it I think the way we're dealing with seizures is essentially sedation. Every time Kai seizes (which is moving more towards a big seizure or a set of clusters every hour/hour and a half) we pump extra drugs into his system and he sleeps. The nurses here call it 'settled' rather than sedation.
It's a different kind of struggle.

My first night here I sat up till 3am with him. The nurses were busy with meds and getting him sorted, so I sat with him, letting them know when a seizure wracked his little body. I struggled though, being so sleep deprived.


Everyone keeps telling me I need to take care of myself, but what they don't understand is that if it's between me and my baby I will always put my babies needs first. If there is no one around to be on seizure watch, I will stay up and watch him. If he needs anything, I'm there. I can do switch out with Sam and the nurses when they're there and available, but if they're not, if they're busy, if there's even the remotest chance one of his subtle seizures will be missed, I'm there. It's my job as his mama to be there, to make sure he's catered for, to worry and love on hum. It sounds stupid,  but I've never taken a job as seriously as I have this one. 

Once I got to know the nurses and the system, there was a bit more trust and I was able to sleep. Everyone here keeps saying 'lean on them' but I struggle with that. I don't want to lean on them. I feel guilty for leaving my baby with the nurses every night while I sleep. I feel guilty that I can't do everything my baby needs.


Being in hospice is hard.

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