I’ve spoken before about the support we’re lucky to receive so we can help Mikaere. He essentially needs 24/7 awake care because of his seizures (where he often stops breathing, or might choke on his secretions). We’re lucky in that we have an amazing support package, with 7 nights of nurses, 5 full days with a 1:1 nurse for when he’s at school and not able to be with us.
The offshoot of this level of support is the tremendous amount of trust we have to give a literal stranger, to welcome them into our home, our family, to be around our kids and to care for Mikaere, particularly at school when we’re not able to be with him. The training is never ending, the checking in is never ending, are they happy? Are they safe? Are our kids safe?
We have little to no privacy (there’s always someone in our home, which is… small) and after the shock/betrayal of one of our nurses a few years back, we’re a little bit less trusting than we were before. We ask more questions, we check in more frequently, we don’t let things go, and there’s a clear line now – though one that’s hard to navigate. We’re not family, but there is significantly more trust involved than someone just doing their job.
There’s also the paperwork. Care plans, and risk assessments and obvs books. Originally the agency used to make up these (much smaller) observation books, but I found they were asking for information that wasn’t necessary for our boy, and was taking way too long for our nurses to fill out, meaning it was taking them away from Mikaere. Blah. I would take them apart, streamline them, and put them back together. In the end I just asked that they send the raw packs, and I’d put them together. I make them massive now (no more of this month by month business), but it means 3-4 times a year I’m spending an afternoon making obvs books. Printing supplements and punching holes and binding.
So, you know, it’s been a wild Saturday afternoon. I was talking to Sam, and prebabies Saturdays were for adventuring, and wine. Now it’s music lessons and life admin and Pixar movies on repeat. Parenting is just the most wild flip, hey?
#nonketotichyperglycinemia#nkh#nkhawareness#glycineencephalopathy
