Despite yesterday being horrid for us, our little guy is still sitting at status quo. He’s not awake. He’s still seizing. He’s still breathing by himself.
Because he’s on a course of steroids and not moving he’s retaining all the fluid in his tissue and is swelling up like a balloon. His socks don’t fit anymore, and we’ve been struggling to keep his feet warm (they do heel pricks to take blood for blood/gas tests, and it’s easier/shorter if his feet are warm).
My sister and Dad arrived yesterday from NZ, and they bought booties from my Mum with them, a size up so they fit his poor little feet!
We’ve also started more (!) medication. A diuretic to help with the swelling (because the edema could impact his breathing) and a potassium supplement, because the diuretic reduces potassium levels.
Honestly, the amount of medication he’s on is worrying, his body is so small! I’m hoping that once we can wean off some of the medication, hopefully next week or the week after, hopefully his body will respond and he’ll recover. I feel like we’re doing way too much, but each individual thing makes sense to do. I struggle with this, because he’s only tiny.
I also battle daily with the drs on things like glycine levels and his bloods going to the right labs. I pick my battles, but oh, my heart. It’s my job as his mama to worry, and to love on him. I want to trust his medical team, but they are so many of them and there’s no one person taking the lead, no one person whose responsible or consistent – just me and Sam. And NKH is so rare, that for each new nurse, each new Consultant we answer the same questions, and I trust his team a bit less. So, I love on him, and I sing to him and Vaseline his lips, and I become his medical expert too.
We can do this, my little guy. Please pull through!
