immune vulnerability

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.

We’re now on Day 10 of this horrid virus. Ten days of suctioning, fever checking, horrific seizures, little to no sleep, housebound and one very sad little guy.

Here is what I want to nail home today: Kai has enterovirus – that’s what is causing the bronchiolitis.

Enterovirus is shared person to person by DIRECT contact. Which means that someone touched Kai without washing their hands first.

Sam and I are pretty religious about hand washing. If we’ve been out, before we touch anything we wash our hands. Before we touch Kai we wash our hands. Frequently throughout the day, we wash our hands and use antiseptic hand gel. Just because.

We are religious about this. For ourselves and for Kai. Our nurses and therapists are pretty good when they come in, and before handling or after nappy changes or anything that requires some sterility, like meds or suctioning.

But here is what I’m kicking myself over. Whenever we see anyone out and about, their instinct is to touch Kai. His hand, or his foot. He’s a beautiful baby and so many people just want to love on him.

And selfishly, I want them to love on him too. The more people that love on him the more impact he has on his little world (this still stems from The Fear of the inevitable, I’m sure of it).

But thinking back to two weeks ago when we were out and about at appointments and play dates and in the playground… when we had therapists and cleaners and workmen through our home, when we went to play sessions at the children’s centre…

When we were living life because I wanted to be a tiny bit more relaxed about the bubble we were living in now that Kai was a bit older.

Someone who probably didn’t even know they were infected touched Kai and now he’s suffering big time.

Oh my days the guilt I have. If I had been super strict about the bubble, would Kai still be ill? Would he be suffering right now?

Who knows. I hate that he’s ill, and there’s no magic anything to help. Even calpol isn’t working as well as we’d like.

Worse is the fear that he’s backsliding developmentally. Gone are the chats, sucking is gone, as is any large motor movement exploration. Sigh. I hate this. I hate that he’s so sick from what would be a cold and a runny nose in anyone else.

Please take this away: if you haven’t washed your hands, please don’t touch medically fragile children. Please just don’t.