It's becoming increasingly clear how valuable and game changing a good nurse can be. We had one nurse go out of her way to accommodate us - working around hospital protocol so I could stay the night with Kai.
They rolled a hospital bed into Kai's bay, right alongside his incubator. I changed into pjs and padded quietly through the dark PICU, Sam had already scooped him from the incubator and oh. Being so close to him, even if he did have all the monitors and wires, not having to leave him, having him so close, cuddled right next to me the whole night oh oh oh.
I used to take this for granted when he was at home. After the 3am feed I'd burp him and instead of getting out of bed to put him down in the crib, I'd slide him down between me and Sam knowing that in a few hours we'd be doing the 6am feed. Sam would wake and would tell me to put him back in the crib, but I never did.
I'm glad now, that when he was home I took the extra cuddles, having him within touching distance.
I didn't sleep well, in the dark of the PICU there were beeps all night, people coming and going. There was someone else's emergency that happened at who knows what time, my heart broke a little for them. And then there were the seizures. Oh the seizures.
They happen so often and go on for so long. We give break through med again and again and I hope, I hope his body finds the time to rest in between. I wonder though, how much rest, proper good rest, he gets when he's sedated like this.
Still, I'll take every night I can with him, seizures not. I'm hopeful we'll eventually get the seizures under control and he'll be able to rest under his own steam. Fingers crossed.
As always, we're still fundraising for NKH research. If you've donated, thank you - genuinely thank you. If you haven't and you're able, please consider donating even just a small amount. It has such a profound effect on what research can be done and that ripples out to the NKH community. justgiving.com/mikaere-xmas