When people ask how Kai is, I typically respond ‘up and down’. On an up, he has good awake times, and is chatty, moving his limbs with intention and determination. And the last little while has been an up. I’m very aware of just how up he is. He’s delightful. We’ve had only a handful of seizures, and we’re able to go about our day with some normality.
This week… this week we’re sliding into a down. Both Sam and I can see it coming, with fewer and fewer awake periods. I brush it off as a growth spurt, or teething, or that his body is recovering from something and needs the extra rest… I’m hoping it, willing it to be one of those things.
Except then the seizures start up. Again. Horrible horrible seizures. And then Kai’s awake time was lasting minutes. And then he stopping taking the bottle. We’re in a down, and I’m devastated. It was only a few weeks ago that we shook off the last lot and managed a short period of stability.
And I do what I always do, which is badger our nurses and our metabolic consultant into reviewing the medication doses against his latest weight. I ask for bloods to be taken (although that’s a whole other battle. It’s turned out that the lab has stopped processing our blood samples because they come too frequently (every few weeks) for the lab to handle. So they just don’t do them. Furious doesn’t even cover it).
We talk to our palliative care consultant who argue for weaning off an anti-epileptic, and our neurologist argues for weaning off another. The parents Facebook group has all sorts of comfort and other advice for things we can try.
I’m torn at all the options and trying to understand where to even start. No one is looking at the whole, holistic picture except me, and I’m no medical professional. I feel like I’m trying to hold back a tidal wave with my palms. And as I see Kai sink lower and lower into the world of unconscious seizures I struggle. Everything slows down a bit and gets heavy. I recognise the signs… I stop making the bed and worry less about going out and about without make up on. I fight with Sam, and stop going out for walks, hunkering down while I try figure this out. I graph the number of seizures against his meds and his weight and his last (super outdated because the stupid lab is slow at processing bloods) glycine level.
I’m not sure how to manage myself, exactly.
I used to bury myself in research, and then it was fundraising and now… I look to distraction because I just… I don’t know how to keep managing these downs. They keep coming. It’s never ending.
I wonder constantly if this is the beginning of the end for Kai. Dreading the moment we have to give more and more rescue medication. Or whether we’ll work out what it is, or whether we won’t and he’ll come around anyway. The fear. It never leaves.
And when people ask how Kai is I can’t honestly bear to tell them how down we are. I don’t want to see the pity, or the sadness everyone has reflected back at me. We keep on keeping on because there is nothing else to do, because we love Kai so much. It’s just, that the ups are so fleeting, and the downs are so deep, and no one really knows what’s going on inside Kai’s little body. No one really knows how to help him.
When we were in the NICU, we would say Faith and Fortitude to ourselves, willing just to get through to the next day. Now I say it, and I’m willing us to get through the next crisis, the next week, the next month, the next year. After the uplifting hope of meeting Nick Greene and how the research is moving forward, I can’t help but wonder if it’ll be too late for Kai.
These down thoughts… they are very down.
So, faith and Fortitude. Onwards. Hopefully this down won’t be a long one.