On the end is in sight, but the cost has been painful

By 28th November 2017 January 25th, 2018 No Comments

Kai’s fever finally broke over the weekend. Hallelujah! He’s still not 100%, but we’re out of the worst of it. With the fever gone Kai’s been able to hold his own 02 levels, his heart rate is down and his respiratory rate has returned to normal. Which means he’s not working as hard to breathe – thank goodness for that! He still has the crazy chest crackles, and the mucous vomits are still a thing, but we’re on the tail end.

While I’m grateful the end of this stupid virus is in sight, it’s hard to see the decline. Kai has backslid developmentally. The seizures and illness has really knocked his body for six and he’s paying the price.

It’s heartbreaking to see. Is it too brutal to list all the changes?

  1. Kai has lost his suck – which means he’s not even bottle fed right now. From taking purées orally to formula only through the tube… that’s hard to see. I thought we’d left the pump behind, but we haven’t.
  2. He’s no longer chatty, there are no more little squawks or happy giggles. Kai vocalises only when he’s upset, which is heartbreaking. I miss his happy little chirps.
  3. He’s lost his tone. No big motor movements to hit the bells, Kai’s stopped exploring with his arms, he’s stopped kicking.  No more head holding. No more trunk support. Just a super floppy little baby, back to newborn like tone.
  4. The seizures. Oh my days the seizures. They’re longer, more frequent and more violent. More tears, more pain.
  5. The dystonia movements. They’re new and not good, I don’t think. Dystonia is a neurological movement disorder – where Kai’s hands and arms and wrists contract over and over again, pulling his arms and hands into an abnormal fixed position. It’s horrific to watch. It’s something to do with his nervous system over reacting, all the time. Very startle-y, very twitchy.

All of this came from “just” a cold. Something you might get sniffles for, and brush off. No big deal. Except it’s a huge big deal for us. My kid went from eating to not eating and being 100% tube fed. He went from being aware and curious about the world to a sad little shell of himself. This is what happens when you touch a medically fragile child without washing your hands.  Always, always wash your hands. Always.

There is this other thing I’m struggling with… The dystonia pulls Kai’s hands into odd positions. For the first time (to my eyes), Kai looks truly disabled. Before the dystonia, if Kai was hanging out in his buggy, tube aside you wouldn’t know he was ill. He’s not a wheelchair, he’s not drooling or teeth grinding and his eyes don’t look out at odd directions. He was just a beautiful little boy.  Strangers would stop us at street lights or in supermarkets to comment about what a handful he must be, or how well behaved he is. And I think I found comfort in it, that while I know he had NKH and intellectually I was onboard, my child didn’t look disabled.

Kai looks disabled now. And I know it means nothing, that that nothing has changed in Kai’s world and I still love him like nothing else, dealing with other peoples view of him has been difficult. The pause as his therapists take in the changes,  the lady in the supermarket who wanted to smile at a cute baby, but after seeing Kai looked away and avoided my gaze, the little girl who asked her mother quite clearly ‘Whats wrong with that baby?’ and her mother telling her not to ask questions.

I feel like I’m grieving Kai all over again.

And I know, I know the skills might come back. I know. I know that once he’s fully back up to full health it might all be different, and the dystonia might go away and he might recover his suck and we can back to trying foods orally.

But it’s hard to watch now and not feel guilty. And wonder whether if I’d been more strict about being in the bubble, if we hadn’t gone to the children’s groups or the playground, or if I’d put his buggy raincover on while we were in the hospital waiting room… whether he might not have caught anything. And might be moving forward, rather than backsliding.

Honestly, I’m trying to be kind to myself but the guilt is overwhelming. Cold and flu season, hey? It’s horrid. Please can it just be April already.  Let’s skip winter.

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