So, we’re self isolating in the light of Coronavirus. Sam is working from the spare room, all appointments have been cancelled, all nurse support has been put on hold for the next week or two, and we’re staying in. Just us three.
For us, Mikaere’s respiratory health is a priority. When he gets poorly his o2 sats drop, his heart rate goes up and he has more frequent seizures. When he got rhinovirus we lived on the ward of our local hospital for weeks until I could convince them that he was safer at home (we have all the equipment they have on the ward at home, without the hospital super bugs). But with Coronavirus? If he got it, and needed ventilation, that wouldn’t be ICU for us. Instead that would mean hospice on end of life care. Because Mikaere’s emergency care plan, as set out by us and his palliative care team has said that if he needs ventilation, that’s too extreme a step.
So you can bet we’re self isolating. When your son is the vulnerable camp, you be as risk averse as you possibly can, we’re not risking health. We’re being safe, as safe as we can be.
So here we go! Self isolation. Hope you’re all well and safe!
#nonketotichyperglycinemia #nkhcansuckit #specialneedslife #nkhawareness #coronavirusuk #cureforNKH
