We've been in hospice for four weeks now (that's longer than we've ever been at home) and we're trying to take more on. Usually we would wheel him out to the nurses station every night, so they can watch him for seizures, but as he is seizing less (touch wood) he's been sleeping in our room with us.
It's a bit weird. The nurses creep in and out every few hours for his meds, and to check the syringe driver that pumps his meds in. But otherwise it's on us.
I like that we're slowly taking back our babies care. It irks no end that I'm sharing him with (very very lovely, very competent, well trained nurse) strangers. Here's what I want: to be home with my baby, settled in on the couch in my pjs like every other Mum with a new baby. I want time with my baby. Out of hospital, out of hospice.
So, we're doing the feeds and the crazy crazy med routine, and owning the aspirates. The only thing I'm not doing is putting the NG down his nose, because every time that has to happen I want to cry when he does.
We're not in a routine yet, but we're getting there. We're totally getting there.