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

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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.


On the first hospital visit of flu season

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I’m not fighting with the registrar, exactly. We’re in A&E (of course we are – the start of flu season? We were bound to end up here eventually). It was a pretty typical lead up. Kai was working hard to just breathing and his chest was crackly. I’d been monitoring his o2 (92 – 95%, so slightly low), his heart rate (slightly fast), his respiratory rate (also fast) and his temp (37.9 – low grade fever).

Kai’s sick. Probably something like bronchiolitis.

I rang the nurses because I’d been oral suctioning after each cough. Not too often, because I didn’t want to increase his secretions. Just when he was having a tough time. What I wanted was a nurse to come do a nasal/trach suction (where they put a catheter down Kai’s nose and suction out the mucus he was having trouble shifting). I’d never done one and wasn’t about to do one maverick style now. Except that our nurses are a cautious bunch and instead of coming to do a suction, they were concerned with his o2 levels and suggested we take Kai to A&E.

While I’m always dubious of a ‘just in case’ hospital visit (dealing with the fear our team has and unnecessary escalation) I was keen at least to get swabs done to find out what was going on. So off we went. Kai rather magnificently timed a seizure which moved us from triage to majors (as always) and there we settled in.

Bloods, some suctioning, general monitoring – and yes, suspected broncolitis.


Now here’s where my polite but firm mama bear insistence comes in. They very politely told us that Kai’s white cell count is high and wanted to admit us, just for observation. We’d do repeat bloods and hopefully get discharged the next morning. It took a moment to absorb but when my brain finally kicked in here’s where it went:

  1. We only did bloods because Kai’s regular blood work is due. Not because they regularly do bloods with bronciolitis or with Kai’s general presentation/breathing concerns.
  2. White cell blood count could be high because of the elevated number of seizures (increased because: Kai is poorly) or because of bacterial infection.
  3. If it’s seizures, the white cell count will not go down tomorrow. Meaning they just want to watch Kai, just in case and we’ll be in the same position 12 hours from now.
  4. If it is a bacterial thing, the swabs will tell us. And the treatment is antibiotics, we have bottles at home for this very reason.
  5. We also have suction, o2 tanks and a stat monitor to manage symptoms.
  6. If we are admitted, Kai, as vulnerable as he is, is more likely to catch something else while we are here. Something worse, is my fear.
  7. The risk of sending us home is if Kai deteriorates rapidly overnight. The peak of bronciolitis is day two/three. So tomorrow and the day after.
  8. If Kai does deteriorate rapidly, we’re a short blue light ride from hospital but…
  9. Kai has a terminal disorder. We decided early on not to put Kai through extreme or invasive procedures to extend his life unnecessarily. So if we’re being rushed to hospital… there’s not much more they would do there than we would at home. IV Fluids, maybe. But IV Fluids in the face of a severe deterioration…

So. There is nothing they can do in hospital we can’t do at home. If we have clear parameters, we can come back if we need to. If we need to come back, it will be because Kai is very very poorly. The benefits of home outweigh the risks of leaving. I’ve talked to two registrars. We’re waiting on the consultant. I feel like we’re in here for just in case. The fear of the worst, really. Not because we need to be here.

I’m hoping we can go home. I essentially bought him in for nasal suctioning and the swab. I’ve already asked for an o2 plan and nasal/trach suction training.

We’ll see. Settling in and waiting for someone else to tell us we can go home is nails-on-blackboard mind numbing.

Fingers crossed.

Update: Took two hours but we’ve been discharged out of A&E and are going home, NOT up to the ward. We have some very clear parameters for what do and when, and for when to call an ambulance and go back. Which is to say, we got an O2 plan, and I got a run down on how to do nasal/trach suctioning. YES!

Here is the plan:

  • If Kai’s o2 stats drop anywhere near 92% we start o2, starting at 0.2L and go up as needed.
  • If his stats don’t go up, or Kai changes colour, we call an ambulance and blue light in.
  • If Kai has a fever we try calpol, and escalate to ibuprofen if need be.  If his temp doesn’t go down we try antibiotics and call the CCNs who no doubt will tell us to blue light it in.
  • If Kai is having a really rough time (increased heart rate or respiratory rate) and it doesn’t go down with the fever, we blue light in.

But you know what? While I absolutely would rush him back to hospital the merest hint of trouble, I’m pretty sure our little guy is going to be just fine at home!

Very very very glad we left. This is better for everyone.