On being in the A&E

By | #teammikaere | 2 Comments

Mikaere’s had the once over by several people. His nurses have taken bloods, he’s had a nebuliser and is on o2. His gas and air look good (his lactates especially), his temp is holding steady and we had a visit from a PICU Nurse we know who came in to say hey.

So no red giant flags, and I have a chance between consultants to go get breakfast.

And as I’m walking down the familiar halls to M&S I think Saturdays are the best days to be here. There are less people in the hospital today. We had the bonus of coming in early, just after the shift change but before all the other kids had enough time to hurt themselves and fill up the a&e waiting room.

Is it weird that I think all this? That I know the time shift change happens? That I know when the lulls and peaks of our a&e are? That I come armed with a cheat sheet that answers 99% of the nurses/drs questions, and the two questions I’m asked (what is blood test for glycine on the system as – amino acid blood profile – and what colour is the bottle – green) – I can answer without really thinking about.

Our last a&e visit was months ago. MONTHS ago. I guess this is the winter season kicking off, right after a week of appointments and therapies after the summer break. I’m not happy we’re here, but now that we are I’m not panicking about it, too much. I’m hopefully we’ll make it home this afternoon sometime.


A few hours later and I’m worried. We’re still in the A&E majors, Mikaere’s still on o2 and sleeping, but he’s not holding his o2 levels above 92%. We need 94% or higher. We up the rate to 1L. That’s the borderline dose. It’s not a super high dose of o2… but any higher and we’re staying over.

The nurse notes say they’ve booked a bed upstairs on the ward (just in case) and I’m positive that if this was any other kid, or if I hadn’t expressed my concerns about the risks of being on the ward we’d be up there already for observation rather than down here. But down here is safer. Down here the A&E majors is filled with broken bones and a girl with ENT drama. There are no other chest infections or mystery illnesses in our room. The ward I know is probably filled with more things that pose a risk.

So we wait, we see. The idea is that the longer on o2 he is the easier it’ll be for him. His body won’t have to work so hard, he’ll have more in the tank for recovery. Or so we hope.

I’m worried though. I don’t want to go up to the ward. That’s the start of the path towards deterioration and I’m scared that each escalation will mean a step toward terminal.

But we’re not there yet. We’re not. We’re just in A&E still, just in observation. We’ll see.


The bloods are back. The chest xray clear. But Dr Erin has a game plan. She called our apartment a mini hospital. We have suction, a stat monitor and oxygen. We have all the medical equipment that Mikaere’s currently making use of on A&E.

I think that’s our saving grace. Kai’s just barely managing to keep his stats up with o2, and we’re able to wean to 0.5L when he’s awake. It’s a small wean, but it’s enough. We’re  discharged with very strict instructions of what to look for and when to come back. We have nurses calling to check in, and with a discharge note we’re waved off.

Mikaere’s not any better than he was this morning, but he’s not any worse. I was right to put him on o2 it turns out + I’m grateful for the reassurance.

Kai’s ill. He’s not holding his o2 levels up by himself. But we’re home. Thank fuck for that.

On managing bronchiolitis

By | #teammikaere | No Comments

We’re at home, which is more comfortable for Kai (and generally just better for everyone). We’ve battened down the hatches and are holding fort against bronchiolitis- its hard work hey.

I’ve cancelled all Kai’s appointments (six across four days not including the nurse visits. I’m gutted because some were so difficult to arrange!!) and it’s just me with my full focus on Kai. I literally haven’t left the house since we got back from the hospital. I designed and printed our own observation sheets and we do them mostly every hour. The benefits of design skill, hey? Mostly so I can see at a glance how Kai’s doing, and fend off anything before it happens. He’s managing, but it’s clear it’s a struggle. Poor little guy.

Kai requires regular suctioning out his nose and mouth, which is horrid for us both. It’s literally me suctioning the goopy flem out from his nose and the back of his throat. It’s thick and horrid and watching it go down the tube makes me want to gag. But Kai always breathes better after, so we do it. Not too often because we don’t want his body to go into overdrive and make more, just when he’s struggling. It’s pretty gross – but hey ho. The things we do.

We haven’t needed oxygen yet (thank goodness) but his temp keeps going up, and when it does his heart rate and respiratory rate skyrocket. I’m trying to manage it with Calpol (the magic drug for babies) but watching the fever bounce up and down makes me feel like I’m in a never-ending loop.

Observations, meds, chest percussions, feeds, suction, nappy change, seizures.


The consultant said it would be about five days of unpleasantness, with the worst of it being Day two/three (meaning today…. awesome). I know this is standard for special needs kids. I know it is. But it’s my first time through this particular rodeo – last time I let them convince me we should be on the ward (bad call). It’s hard work, and I do it because I love Kai (obvs) but also because I can’t not.

However the idea that we’ll be experiencing this on and off all winter long for all the years that Kai is with us? It’s like staring into a tunnel with no light at the end. I hate this. I hate that Kai is suffering, that he’ll forever be medically fragile. That anytime anyone is sick, they could pass it on to Kai and we’ll be right back here.

That, logically, it’s likely that these chest infections are what will bring about the end. From what we can tell, the end in kids with NKH is typically caused by respiratory issues. And for every chest infection Kai gets, the weaker his chest will become until one day he won’t be able to breathe. I hate the idea. I loathe it.

So while I’m here giving it my all, to help stave off this stupid stupid cold – I can’t help but feel like we’re edging towards the inevitable. And then I realise how overwhelming my fear is. My child has a terminal disorder, and I have The Fear. I hate this. NKH can suck it.