I’ve let go of imagining what our future might look like. The life I thought Mikaere would have, the one I wished for him before we knew about NKH, we know that’s not a possibility anymore. Instead we moved to getting through one day to the next. Another day another day. As he got better, we were able to look a few days ahead. Then a week, then several weeks. That was before.
Now? Now we’ve regressed and everything has condensed down again. Our little guy isn’t doing so well. We’re back to a sleepy, unresponsive him. He’s stopped holding his head up. He no longer cries out with big healthy loud rage, but is more like a sad little kitten. He opens his eyes for a moment or two at a time.
It’s come on so suddenly. So the doctors here are chasing metabolic consultants in the early hours of the morning. We’re changing meds and we’ve put an NG tube in, just as a precaution.
Here’s what bothers me: this is reactive medical care that probably could have been avoided if we knew what his glycine levels were. Except it takes two weeks for his blood results to come back, and for the past two weeks we’ve outgrown two doses. What’s more, those two doses are blind, because we don’t know his levels. So stupid.
So. My baby is unresponsive, and has a tube across his beautiful cheeks.
We’re absolutely spending Christmas in hospital.
PS if you haven’t already seen, we’re raising funds for Kai’s first Christmas – justgiving.com/mikaere-xmas. If you’re able, please consider donating. We truly believe Kai’s future is tied to NKH research.