I’ve been really careful to not share all the downs and hardships over the last year or so. Mostly because I want Mikaere to have his dignity and his medical experiences should be private and not content, but I also want to talk about what it’s like for us, as his parents.
Mikaere had a hard time last week and ended up in an ambulance and in A&E. He very narrowly missed a stay on the ward (and only because of some fierce advocating on my part – the ward is not a very safe place for respiratory vulnerable kids) and it can be a scary moment when you’re trying to navigate a system to keep your boy as safe as you can.
Knowing that it’s likely I’m the one who knows the most about his disorder out of all the people in the hospital (NKH is very rare), and having to be medically competent, so I can ask all the pertinent questions (does this med get synthesised down a pathway that this metabolic drug also does? Do his bloods suggest toxicity of a this metabolic med? Will this plan interfere with all the other plans we have? Whats causing all these issues? Don’t say deterioration, because I’m not having a bar of it).
Because I know that if I make mistake, or if the medical team misses something, it’s a huge world of pain for our boy. It means that I feel I need to be hyper vigilant, and very into the details. It’s also taking on the power dynamic, because there was a lot of pressure to admit him. They said death was a “potential risk”, but then didn’t want to have the quality of death conversation and were shocked when I did (don’t try threaten death to a palliative parent unless you’re serious, cause wtaf).
He’s home now, and fine, and that’s wonderful, but he’s started a new medication which has meant extreme lethargy. Kiddos with NKH are already super lethargic, but while he’s titrating up, we’re seeing very little awake time.
I miss my boy, and his little cheeky vocalisations and funny grins. I advocated hard for this path, did loads of research to figure out what might work best considering his med schedule, looked at what other NKH parents had decided and how other NKH kids reacted but I wish it wasn’t so hard for Mikaere, or for us. NKH really sucks, hey.
