I can’t even breathe – I really wanted to post something cute for Christmas Day. Something light hearted. A selfie of all of us in Christmas Jumpers, or his little feet in snowman socks.
Except that Christmas morning he started having seizures. Lots of seizures. Enough that the consultants visited us before doing rounds. Enough that we gave him rescue meds to give his brain a rest. Enough that the consultant called our neurologist at home, interrupting her Christmas morning to discuss an action plan.
Enough that she felt it important to know what our quality of life stance was. Whether we had a plan.
Oh. These conversations always happen in the early hours, when I’m sleep deprived and Sam’s not here. So tricky. So heartbreaking.
Our little guy, he is not doing as we hoped. But we have a cracking team of drs (one even dressed up as Santa and walked the wards giving our presents) and we know they’re thinking through all the things.
I know this, because we’ve started B6. It was something I suggested we look into, having heard something from another NKH mum.
One of the drs said she did some research after she went home last night, and while it’s a long shot we’ll have a look. So we’ve started it.
I appreciate that we’re all working together, and they take my straw grasping seriously, with consideration. I just want what’s best, and it turns out so do they.
I said a few days ago I wasn’t scared, because I knew what was going to happen. Now? Now I have The Fear. I don’t know what’s going to happen, but this unresponsive phase is going the same way it did when we were in NICU, except he’s already on the meds. We’re already increasing them, over and over again.
So, we take it day by day. And this Christmas Day, we eat all the chocolate and mince pies, listen to carols, watch donations come in (thank you!!!), and count how long all the seizures are. And we hope. We hope our little guy will wake up, that he’ll cry, and move. We hope tomorrow will be a better day. Faith and fortitude.
PS Did manage to take a Christmas Selfie
#nkhCanSuckIt
