Tag

illness

May 31
0

On visiting the A&E

By | #teammikaere | No Comments
It’s not the first time we’ve had to call an ambulance this year. It doesn’t get easier. The counting of the seizures, timing them, logging the presentation. After we give the second buccal, we’re meant to call an ambulance, but I don’t want to. Not really. I don’t fancy spending hours in a&e, holding down my boy for bloods. (That’s not why, though. The why is that I don’t want this to be beginning of the end, I don’t want this to be a deterioration, but I don’t let myself think those things. Instead I think about the uncomfortable chair and the boredom and the endless waiting and the child with the disorder so rare people just ‘pop in’ to introduce themselves and say hi).
So instead I call our critical care nurse, and let her convince me. She clears the way. When they arrive, the ambulance service already has Mikaere’s directive. We’re ready and waiting, and so we head right out.
Thanks to our nurse, the paeds A&E knows to expect us, which means we go right into Majors (it’s busy. The other two bays are already full with a broken ankle and a concussion. Usually they’re empty).
Triage is quick. Seizure frequency is up and drastically different from his baseline. We’ve given emergency meds twice and the seizures are still breaking through. We’re here for a review, and to rule out any acute indications that would mean a symptom stay.
The physical review is clear. No red flags. The bloods come back clear. Infection markers are low (so no infection). Everything looks fine.
At this point we’ve been in the a&e almost seven hours. The last four have been seizure free, and as there are no acute concerns, they’ll send a message to his neurodisability consultant to follow up, and they wave us out.
Grateful to be home. Hate seizures. Hate that this is happening with more regular frequency.
Hey ho. Life with NKH, hey?
  
Aug 17
0

Isolation and Backsliding

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We’re struggling. Without our giant team of therapists and nurses and all the many many people in our home who help us help Mikaere… we’re operating at a completely different level to pre-covid. The bar is much lower. Trying to get stretching and physio and therapy in…

Bluntly, it’s not happening, and I can see Mikaere’s development backslide as a result. It’s heartbreaking, and managing the guilt of we’re doing our best and knowing that our best isn’t good enough… because it can’t be. Two people can not replace the team we had. We’re trying to be everything and… we can’t. We can’t be night nurses and physios and SALTS and CCNs and OTs and vision therapists. That list doesn’t even include the fun groups, the social sensory time, or swimming or yoga or horse riding. Trying to find the mental capacity during the day to get in the basics of stretching and the physio and the equipment… it’s not happening.

We pulled out the walker today. The idea is not for him to walk, but to spend some time in a different, upright position, feeling weight through his legs and ankles. It’s been a while.

He spent a good five minutes of the fifteen he was in it not wanting to put his feet down. He’s miles away from where he was, and just… it’s hard.

Quality of life wise we’re doing our best, but how do we calculate risk/reward in this case? The risk of allowing people into our bubble? Most of the UK has normalised living with Covid. But when the risk for us is death? How do we normalise that? Is that risk, his death, worth allowing our team in to help support us support Mikaere? To give him a better quality of life? In NZ, our family is a vicarious no, because they’ve normalised life without Covid. In the UK, our friends shrug and ask what would need to happen for us to open our doors, and he’s terminal anyway, so shouldn’t we bet on quality over quantity?

I’m torn and I’m scared and I don’t have the right answers. I don’t know what the right answer is. How long can we keep living in isolation like this? It’s been months and months and months.

I can’t help but feel like there is no right answer, and either way we’re failing Mikaere. On the up side we found out it costs half a million pounds to hire a private plan to fly us to NZ. Where we could be safe. Anyone have a half mill handy they want to donate to our covid-safe migration? 🤣 I wish!

Aug 04
0

One of those days

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Today’s been a whole day. Of seizures and vomits and screaming and unhappiness and this face, this face that says so clearly he’s feeling sorry for himself? Yeah. That’s our today.

The shit thing is that this is our status quo. And I’m torn, I’m torn between pulling back the curtain and feeling vulnerable so you can see our reality, or resisting the pull to put some kind of positive slant on it or whether I should just delete this post because to be honest, today is a hard day. It’s one hard day of many hard days, because that’s just how life with NKH goes.

It’s hard for us to continuously share the hard things. It’s hard for us to then manage other people’s sadness at our hardship. It’s hard to navigate all the feels, because at the heart of it, no one wishes we weren’t living the NKH life more than we do (watching our son suffer and not being able do anything is our own special kind of living hell).

And I could, I could paint this with the positive brush. Of what we’re grateful for and focusing on the positives, but I don’t want to diminish this… this is our reality and I don’t want to positive-pretended make it palatable for others consumption.

So, honesty then. Today’s a hard today. And honestly, I’ve never hated NKH more.

#nonketotichyperglycinemia #specialneedslife #seizuressuck #nkhcansuckit #itiswhatitis #hardday #seriouslywherearethecustarddonoughts

Jun 19
1

On the A&E during lockdown visit

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The thing with isolating is that safety stops at your front door. Inside: safe. Everything else: unsafe. We’ve been living that tenet for what feels like forever (funny how long 4+ months can feel).

But about a couple of months in, Mikaere started having seizures. Not just one or two, but many. The kind where it knocks him out, and as he’s waking up he has another. He was having very little awake time, losing skills and honestly, they were the kind of horrific seizures where between having the seizure and his brain shutting down, he’d literally scream before becoming unconscious. Melt your heart, panic when your heard it type scream (can I just say now I loathe NKH to the very depths of all that I am capable of feeling). We ended up sedating him, several times. We haven’t had to do that in almost a year.

The other concern was his heart rate. Usually when sleeping his heart rate is 90 or under. Fairly typical, as far as heart rates go. But when I came on shift after The Day of Awful Seizures, I watched as his heart rate went up and down, up and down while he slept. But by morning his heart rate was over 160bpm, despite him still being asleep.

His heart when he’s active and awake and happy is somewhere between 120 and 140. 160+ when sleeping with seizures indicated something was Wrong. Capital W.

Obviously being in isolation trying to figure out what to do adds complexity. Do we go into the hospital and get a review? Do we leave the safety of our flat, and take him into the A&E to get checked out?

Let’s be clear. At this point, we were mid peak. Thousands of people were dying a day. Four times that were testing positive daily. Outside our door seemed a dangerous place, and we were deeply distrustful of everyone. They could be asymptotic, they could share it and we could be facing something else. The risk felt huge.

Trying to figure out logically what was going on, I went through the list of the possible causes in my head:

Had he pooped in the last day, was he constipated?
Had he gained weight? Was his meds dosages off?
Has any of the meds changed brands/formula?
Had one of his meds oxidised and become unusable?
Was his glycine levels too high?
Or were they too low? Did he have Sodium Benzoate toxicity?
Did he have a fever, was he too hot?
Was he in pain?
Was he ill? Did he have an infection?
Was it a full moon, were the planets out of alignment (kidding, mostly. Sometimes it feels like there’s no rhyme or reason to these episodes despite me bending over backwards to figure it out)

A lot of those required blood tests and swabs to eliminate. After some in depth conversation with our CCN (community care nurse) we weighed up the risk. She called down to paeds A&E to assess the risk with what kind of patients they had on the floor and we talked to our neurodisability consult. And then we made the decision to go in. The truth is, with a heart rate that high, with having to sedate him for the first time in a long time and with an abnormally high number of seizures, he should be seen and reviewed. Just in case.

So we went. We assembled enough supplies for the day and for the first time since March, we all left the flat. Mikaere hadn’t really woken since the day before yesterday. He’d been having seizure after seizure. (I hate NKH. I hate it I hate it I hate it).

It was less risk for us to drive than take an ambulance, so that’s what we did. We faced an issue at the door, as only one parent is allowed to accompany a child at a time. We got around that later, by coming in separately to do a handover.

The paediatric waiting room was empty. The staff were careful to stay well back, and had gloves and masks. We were shown to a private triage room immediately. Sam and I were both able to stay through triage while we made a plan. Bloods, swabs and observation while we waited to see what his heart rate did.

We were eventually moved through to majors, and Sam left. I struggled. Sleep deprivation is a real thing, and I’d already missed the lunchtime nap that gets me through the day. Still, they did bloods and the swabs, and took away a urine sample. His heart rate came down, just a few beats a time. Mikaere was still sleeping, bar the seizures.

I also had a minor argument with the reg while he was taking bloods. Mikaere is hard to cannulate and never gets a cannula in on one go. He ends up with multiple bruises and scabs and it’s always awful.

The cannula they used to collect the blood wouldn’t flush (it never ever does). The reg wanted to insert a new cannula against the possibility he needed to be admitted. I argued that he may be causing my baby pain unnecessarily, that he might not be admitted and might not need the cannula. Also, that the emergency medication they’d administer was rectal paraldehyde and wouldn’t be going through a stupid cannula anyway. I insisted they stop. If he needed one later they could try later. It turned out I was right and saved my baby a tiny speck of unnecessary pain and suffering. It’s not often I can do that, so I’ll take it where I can.

While we waited, I convinced Mikaere to wake long enough poop, which was good. He wasn’t hot, not temp. He hadn’t gained any weight that would make his dosages change. We gave him a dose of calpol, just in case he *was* in pain. I was crossing off possible causes in my head. Watching as his heart rate came down a bit more.

And we settled in to wait for the blood results, my eyes constantly flicked between the sat monitor and Mikaere as we waited between seizures. Hours and hours later, the bloods came back clear. No infection (I’d hope so, we’d been in isolation for what felt like ever). Sodium, calcium, potassium all in normal range, so no indication of Sodium Benzoate toxicity. Glycine levels would come back in a week or so. Carnatine looked fine. Liver function fine.

Mikaere woke up enough to play with some toys shared (and disinfected) by the units play therapist. His heart rate was nearly in normal range, considering he was awake.

The consultant came down to have a chat with me. Essentially, he wanted Mikaere to be admitted on the ward for observation. Because we’d already given two doses of buccal midazolam, he’d hit his max 24hr quota. If Mikaere needed more rescue medication because of seizures, the next medication was rectal paraldehyde, as laid out in his seizure care plan.

The problem is that it’s not always easy to get on short notice. We didn’t have any at home (our stash expired, and it had been so long since we’d needed to use it). They had some on the ward, but wouldn’t be able to get any from the outpatient clinic.

If we left we’d be taking a risk. If he was admitted to the ward, we’d be taking a different risk.

We talked it out. Essentially I decided that between solo parenting for the entire night on the ward with sleep deprivation, Mikaere’s seizures decreasing and his heart coming down, and that we’re an 8 minute blue light from the hospital, we should go home.

The consultant argued until I asked if any of the nurses were sharing shifts across wards or working with covid positive patients. Then I asked how many kids on the ward had pseudomonas or rhinovirus or any of the other respiratory illnesses that would also be a danger to Mikaere. He shut up after that. I guess things on the ward weren’t ideal. We were towards the end of winter, so I’m not surprised.

Either way, Mikaere was discharged, with strict instructions about what to do if things got worse. Conveniently Sam had arrived and we went HOME. It was glorious to be back in the safety of our flat. After disinfecting ourselves with baths/showers/changes of clothes I went through all of Mikaere’s meds.

There’s one particular supplement he gets once a day, at lunchtime, called ubiquinol. It’s a supplement that supports cell repair and is a potent antioxidant.

However, the pharmacy had supplied ubiquinone, the oxidised form, which your liver needs to process into ubiquinol. Considering that Mikaere’s liver is already doing so much, and thanks to NKH, it’s not clear what exactly is happening in his liver, anything out of the ordinary could cause things to go sideways.

The horror of it was that because the dose required more capsules than was supplied in the packet, the pharmacist had supplied extras in a jar, and had mislabelled the jar ubiquinol and not ubiquinone (which was the drug supplied). Sam, who doesn’t usually do the 12 meds’ didn’t think anything of it. The jar had the right label on it, so it should have been the right med.

I was livid (with the pharmacy, not with Sam). Our prescription clearly states it should be ubiquinol, not ubiquinone. I kicked off a formal investigation and it turned out a locum pharmacist had made a mistake, and had thought there was no difference between the oxidised and reduced form. They didn’t have ubiquinol in stock, easier to substitute than order in. No harm interchanging them. He could have been right, in a typical patient. But let’s not make guesstimates when the patient has a rare metabolic disorder.

I was gutted, because I really like that pharmacy. They’ve been so good to us, and this was the first mistake they’d made in the three years we’ve been with them.

Luckily, the owner of the pharmacy knows us and was equally horrified. He implemented a whole range of safety checks to make sure it wouldn’t happen again (to us or anyone else) and the locum was let go. I’m sad someone had to lose their job, but I’m also frustrated that the safety, health and quality of life of my baby boy is so heavily reliant on others doing their job as they should, without guesstimates or convenience-based substitutions.

We stopped giving Mikaere ubiquinone, and the pharmacy shipped out ubiquinol quick smart.

To be safe, we also opened new bottles of meds we thought might have oxidised. Between having pooped, ubiquinol and unoxidised meds, Mikaere’s seizures eased, and we settled back into our regular routine.

Sam’s convinced it was the pooping. I’m sure it was the ubiquinone. It could have been some unknown pain/calpol. (In my head I can hear Kai’s Grandma telling us the moon was full). Either way, I’m glad we went in to get him checked out, but I’m more relieved that we all got through to the other side safe.

The special needs life is no walk in the park. Hey ho, onwards in isolation we go!

Mar 16
0

Covid-19 and Self Isolation

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So, we’re self isolating in the light of Coronavirus. Sam is working from the spare room, all appointments have been cancelled, all nurse support has been put on hold for the next week or two, and we’re staying in. Just us three.

For us, Mikaere’s respiratory health is a priority. When he gets poorly his o2 sats drop, his heart rate goes up and he has more frequent seizures. When he got rhinovirus we lived on the ward of our local hospital for weeks until I could convince them that he was safer at home (we have all the equipment they have on the ward at home, without the hospital super bugs). But with Coronavirus? If he got it, and needed ventilation, that wouldn’t be ICU for us. Instead that would mean hospice on end of life care. Because Mikaere’s emergency care plan, as set out by us and his palliative care team has said that if he needs ventilation, that’s too extreme a step.
So you can bet we’re self isolating. When your son is the vulnerable camp, you be as risk averse as you possibly can, we’re not risking health. We’re being safe, as safe as we can be.

So here we go! Self isolation. Hope you’re all well and safe!
#nonketotichyperglycinemia #nkhcansuckit #specialneedslife #nkhawareness #coronavirusuk #cureforNKH

Feb 02
0

On the Respiratory Care Plan

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One of the things we’ve added to our Keep-Mikaere-well line up is a daily nebuliser. It helps loosen any secretions in his chest and with some chest percussions and suction we’re able to remove some of what he isn’t able to do by himself.

This is one of those my-kid-has-low-tone things. Because he’s not upright, because he’s not moving himself about, his body doesn’t manage secretions and mucus the same way. The fight we went through to get the neb + the respiratory care plan was ridiculous. Requesting a referral to the respiratory team was a nightmare. We already have oxygen at home – which came from palliative, not respiratory – but if you have a kid who needs oxygen at home, SURELY it makes sense to be under a respiratory service?! There was months of asking and waiting and justifying and emailing and chasing up.  Honestly, the underfunded NHS has a lot to answer for.

But eventually, months and months after requesting we FINALLY got an appointment. We went, and we talked to a big fancy consultant who was very blasé because Mikaere has a metabolic based disorder, and not a respiratory based one. There is nothing wrong with his lungs, per say. Just his tone.

But, with his tone, he’s not always able to cough. And if he can’t cough, and mucus blocks his airway, his body overreacts, he gags and then vomits. This is clear problem (I talk about the daily vomits all the time, so you know this is a problem for us). So, we it talk through with the consultant, and then we’re palmed off to the nursing team.  I’m not sad about this, because anyone who has spent time in a hospital setting knows that it’s ALWAYS run by the nurses. The respiratory nurses were amazing and smart and in half the time of the consult we had a plan and things to try.

Thus, this daily nebuliser.  It’s not a short, easy add, though. It takes 15 minutes of entertainment in a chair, battling his little fingers as he tries to pull the mask off. Chest percussion is awful, he hates it (firmly ‘clapping’ your child while he cries is not fun for anyone. And before anyone gets on our grill, we have respiratory physios and nurses overseeing this particular bit of care). And then suction. We literally put a thin tube up Mikaere’s nose and down the back of his throat to suck out the secretions there, and then I hope that might cause him to might cough and we’ll catch the mucus and suck it out of his mouth. Sometimes we’re successful and his breathing sounds clear afterwords. Sometimes it’s less so and he sounds like he’s snoring because there is a stubborn mucus plug in his airway that I can’t get to.

But I have to say, I think the added care has helped. It’s not always an easy thing to fit in, but on days that he’s poorly and has a snotty nose – it makes the WORLD of difference. I think it’s just another thing we’re doing to help keep Mikaere as well as we possibly can.

Nebulisers and suctioning mucus plugs. Oh special needs life.

Oct 09
0

On of course we ended up in hospital

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I wish I hadn’t said the bit about a&e in that last post. I didn’t meant to put that out into the universe.

I called the patch team (they’re our out-of-hours nurse team, who are on call in those hours when no one else is available), just for some reassurance that we were doing the right thing and she immediately suggested we call an ambulance. Despite us keeping his O2 stats up in a good place, his heart rate is too high. His respiratory rate is too high. He’s working so hard to breathe.

So here I am, blue lights flashing, in an ambulance. I can’t figure it out. He’s got a cold, but his chest is clear. We saw the gp 6 days ago, the paediatrician 4 days ago,  and now today we are being blue lighted into hospital.

Why is he working so hard to breathe? Why why why?!

And then we’re down the rabbit hole. How do I prevent this from happening again? How do I take care of my boy? How do I do this?

(And then, if we’re getting really dark together, how do I manage if it turns out I can’t do anything, that I can’t help him breathe, that I can’t help his heart beat slower, that I can’t stop him from being ill).

Kai’s just vomited all over the ambulance. Fuck.

——-

After a few hours in the a&e, I’m in a showdown with the registrar. Bloods have been taken and don’t show anything of concern. The chest X-ray is clear. We’ve taken swabs cause clearly he has cold of some kind, but it will take a few days to grow those cultures.

The registrar wants to admit Mikaere for observation. I want to take him home. We have everything they have up on the ward, we have a night nurse tonight and he’s more at risk of catching something else on the ward than he is at home. Home is safer. It’s also only an 8 minute blue light ambulance away from the hospital.

I know I’ve won the stand off and he’s coming home when I ask what they would do here that we can’t do at home, and she doesn’t have an answer.  What would they do if he got worse? No answer. Depends on what the ‘worse’ is, apparently.

The registrar has gone to speak to the consultant. We’ll see. I might be be in a showdown with the consultant next. But I genuinely believe that the best place for him is home. That it’s safer than on the ward. I get the impression there aren’t that many parents who fight the authority of the registrar, but here I am.  Let’s hope the consultant on call either see’s common sense, or is too busy to want to cross words with me.

Update: We were discharged, with strict instructions to come back if things get worse. They gave us loose definitions of what ‘worse’ looks like, but really it’s just if he doesn’t improve, if his heart rate stays “too high”(but again, didn’t give a firm definition of what “too high” looks like and he can’t hold is O2 levels, we’ll go in again.  Our community nurse will come see him tomorrow, and the day after, and every day until it’s clear he’s on the mend. We’re going home! Thank fuck.

 

Oct 07
0

On an awful morning

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It’s just gone 5am, and Sam’s moved out into the lounge to sleep and I’m playing it fast and loose by moving Mikaere into our bed. He’s on o2, but despite it his heart rate is through the roof, his respiratory rate is ridiculous – he’s working hard to breathe.

There are tubes and wires everywhere, and Mikaere is frustrated at the mask on his face and keeps tangling his fingers in all the tubes.

I’m trying really hard to hold it together. But I hate this. I hate that my baby is struggling. I hate that we have to have monitors and alarms and tanks of o2 by our bedside. I hate that at this point I don’t know whether we’ll still be here in bed in the next hour or in a&e.

We all desperately need the sleep. Sam’s night ‘shift’ finished only three scant hours ago when he finally got to go to bed, and I’m run down and exhausted and poor kaikai, he needs the recovery time. Instead he’s thrashing about trying to get his mask off, and the stats monitor is kicking off because his heart rate is too high. (A typical heart rate for a sleeping toddler is between 80 – 120 beats per minute. The stat monitor reads 173 beats per minute right now. That’s me in the middle of a HIIT class!).

It’s just, Kai being ill is such a trial. And I hate this. I think frequently about how neurotypical parents get to go to sleep at night and not worry whether they’ll end up in the a&e before their alarm goes off. About how they’re not woken by stat monitors, heart racing as they try see if their baby is blue or not.

I hate the special needs life, you guys. It’s so royally awful, and my baby suffers and there’s no way to fix this

I read a book a while back, called ‘Was this the plan?’ about a special needs Mum and how she managed her through daughters life and again through her husbands trial with cancer. She says frequently that you can’t do anything about the cards you’re dealt, but you can decide how you play them. BS, is what I think. There’s no good way to play these cards. There is no way to accept the unacceptable. There is no way I’m going to be okay with my son living a life of pain and suffering. With my baby living a life less than what everyone else expects and enjoys.

And if I’m being honest, that entire book was a factual recount of an awful series of events, pain, grief and death. What was missing was any kind of emotional accounting. That’s what would have been helpful to me. How to manage these roiling emotions when life is one emergency after the next, when you don’t have any emotional capacity left and you’re in the dark place.

Because that’s what I want to know. How do I survive this grief, when I don’t even know whether we’re all going to get through this morning?

Nov 12
1

On Stat monitors and o2 levels

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There are two little red numbers on the stat monitor, and I’m staring at them, willing them to go up. 92. 92. 92. 92.

92 is too low. I know the guidelines. He’s got to stay above 94 on 1L or less. I check the tank (is oxygen even coming out of this thing? Is there even any oxygen in there? But the needles on green, when I pull out the tube and crank it up I can hear the o2 rush out).

92. 92. Maybe he just needs a minute. I’ve put him down and he’s just fallen asleep. Asleep is when we need to pay attention, when he’s not moving about or working as hard. 92. 92. 92. 92.

Is the stat monitor probe even on correctly? I peel back the blanket to look at Kai’s chubby toes. He’s still, and the little red light is steady and exactly where I left it. It’s not the monitor. 92. 92.

I put the blanket back and reposition the mask slightly, bothering Mikaere in his sleep.

92. 92. 92.

Do I call our nurses? Not yet. I already know they’ll say if he can’t stay about 94 we have to go back into hospital. I don’t want to go onto the ward. I will, if I have to, but I don’t want to. He’ll catch something else there for sure, and I don’t fancy living in a half metre gap along side his hospital bed, sleeping on a plastic armchair that folds flat. With no sleep for anyone, gross showers and shitty food. No thanks.

92. 92….

Do I crank up the o2? Just to see if 1L isn’t enough?

Just as I reach over to the tank, the light flicks to 93. 94. 95. 96.

The relief is overwhelming. It’s not 92. He just needed a minute. I’m on edge, and have been the last few days. He’s back into the safe zone. I feel like I can breathe again.

We’re not in hospital yet, hey? Thank fuck for that.

Nov 09
0

The winter season

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I literally hate this time of year. Autumn back in September when school went back was hard enough, but now seems every child under the age of five has a snotty nose and a cough. And every parent, and every person that works with children. There are sick people everywhere.

To a neurotypical kid this is no big whoop. For us… it’s a huge deal.

There are so many NKH kids in hospital at the minute, fighting off what would be an everyday cold to anyone else. Their parents and medical staff working overtime to make sure they’re able to breathe, to prevent a snotty nose becoming a chest infection or even something more sinister.

For Mikaere… he’s on his third cold right now in as many weeks. Last week we were in A&E because I couldn’t wake him. He usually has a morning nap from 9:30 to around 10:30, 11.

This time he’d slept past 12. And then past 1pm.

It was a weird one. Mikaere had a snotty nose. Because of his low tone (or even possibly because of his medication) he’s not able to cough the mucus from his lungs up to his mouth, it gets about half way. Awkwardly it’s at the back of his throat and ends up dripping down over his airway.

His body, knowing this is a problem, gags. Mikaere has a super sensitive gag reflex, and this triggers a projectile vomit. Like, out his nose, completely emptying his stomach type of projectile vomit. Vomit shooting across the room kind of projectile vomit.

We suction the best we can, but we have to be careful not to over-suction least we damage his nose (going down his mouth causes a vomit every single time). For those who don’t know what suctioning is, it’s exactly like it sounds. We have a hospital grade suction machine. A bit like a tiny vacuum cleaner. We attach a flexible catheter (like a very very thin and flexible hose of a tiny vacuum cleaner) and have been trained to literally suction out the mucus Kai can’t shift himself. Usually we go down his nose. It’s traumatic for everyone, but is good for him in the long run, so we do our best.

Truth is we can’t stop all the vomiting. We might prevent one in three vomits with suction.

Those other vomits? They happen at any time. Before feeds, during feeds, after feeds. It wasn’t that he couldn’t tolerate the feed. It’s that he couldn’t tolerate the mucus.

The worst thing was that it meant Mikaere wasn’t keeping meds down. If the vomit happened within fifteen minutes of meds, we could regive them and hope he’d keep them down. But he rarely did. We couldn’t regive meds if we didn’t know how much he’d have absorbed and how much he’d vomited.

And so without his meds he became lethargic, and impossible to wake. Even with pain.

However, because he was sleeping, he wasn’t vomiting. He was positioned so his mucus would drip down the back of this throat, to his stomach, keeping his airway clear. When he was lethargic like that, we could feed him and give him meds. Which would improve his levels, so he’d wake up again and we’d be back to the mucus vomiting.

It was weird and cyclic, and we were in and out of the a&e while we tried to figure out what was going on.

That’s what happens when my kid gets a snotty nose. That’s not a chest infection or anything serious, that’s just a snotty nose and a cough.

Which is why we’re so particular about illness. About people not visiting if they’re ill. About not visiting others if we know they’re ill. About people staying home from work if they’re ill, even if you “feel okay”. If you feel okay and you pass it on to Sam, there’s a good chance Sam will pass it to Kai.

(So sidenote: people of BV, stay away from Sam when you’re ill. Don’t go into work, work from home. Please).

Illness and colds are huge right now. Hate it. This time of year can suck it.