was successfully added to your cart.

On the Christmas Carol and Triggers

By | No Comments

I didn’t know the story of The Christmas Carol. When a good friend suggested we go out I jumped at the chance. The last month has been *so hard*  with the isolation. When Kai is poorly and the weather is cold we don’t go out. We cancel all the appointments and hunker in till he’s better. But what that means is that I don’t go out, either. I think it was two weeks before I left the flat, and I was feeling it. The lack of perspective was making me stir-crazy. So yes, I was very very keen to go out. Because we had no firm plans, I googled ‘Christmassy’ and ‘tonight in London’ and what came up was The Christmas Carol at the Old Vic, so off we went.

I didn’t know the story of The Christmas Carol. If I had I wouldn’t have suggested it.  But instead there we were, I was delighted to be out, delighted to have a cup of mulled wine and even more delighted when one or two of the actors offered us mini mince pies. Look at this face – is not one that is delighted through and through?

The show had set up a 360 audience, and as such we were sat on the stage, eye level with the actors, facing the audience. It was amazing. The lighting was beautiful, the orchestra was fab, the three ‘buskers’ were fun (an accordion, cello and violin performing Christmas songs) and the set was quite clever.  Even better, I thought the actors were amazing – the lead, Mr Ebenezer Scrooge was Rhys Ifans, perhaps better known as the crazy flatmate of Hugh Grants in Nottinghill (I much preferred him as Scrooge).

It was all going well and I was fully engrossed in the show… right up until the Ghost of Christmas Present showed Tiny Tim. Tiny Tim had stopped breathing, and his mother walked away to wait anxiously for the Dr at door, while his father pleaded with him to breathe. That’s not what you do, I thought. When Kai doesn’t breathe I do plead and beg him to, but I also reposition him, and blow up his nose, and if he breath holds for long enough, I do CPR.

Unless it’s like that time he turned puce, and then blue. I was so scared, so scared that the inevitable had finally come, my fear was overwhelming. I was completely helpless, and Kai was such an unnatural shade and there wasn’t anything I could do. And just like that, while I watched an actor react in a way only someone who has never experienced it could, I was transported back to intensive care with the very real fear of watching my baby die right before me.

Before I knew it I was sobbing. But silently sobbing, very aware this was probably meant to be a poignant point of the story, but uncontrollably sobbing all the same. I had to stop watching. I covered my eyes with my hands, tears dripping down my face onto my shirt. When the lights came up for the interval my friend seemed a bit shocked to find me in a complete state.

It took me a long time to regain composure, and all the while my friend tried to explain that the story had a happy ending, I couldn’t get past what was clearly a trigger for my grief. I agreed to stay only if there was no more Tiny Tim breathing dramas, deaths or funerals. Needless to say, we left at the interval.

As we left, I offered our chairs to two ladies who had come down to sit with their friend, who was sat next to me. They’d got last minute tickets and were all sitting in different places. “You’re not coming back?” one of them asked, a bit shocked. I understand that:it was beautifully done show. I don’t think they were prepared for emotionally honest me, who, through my tears said: “My son is terminal, and this hits too close to home.”  My friend ushered me out after that.

He took me for fish tacos to make me feel better (which they did). And then we went to Claridge’s, admired their upside-down Christmas trees and was served rich chocolate desserts by young men in white jackets. It was very swish and decadent.  The only blight was it was clear that while dessert at Claridge’s was a treat for us, for some it was their clearly their local while in London. I couldn’t help but feel that the collective wealth in the dining room at that point could easily have paid for a cure for Kai. But hey ho.

It was an odd night. I didn’t realise my grief sat so close to the surface, that I’d be triggered by something like Tiny Tim not breathing. I guess this is one of those things now. Special needs, medically fragile, rare and terminal metabolic disorder parenting.

If you don’t have a terminal child, go see the Christmas Carol at the Old Vic. It really was lovely.

Introducing Eva

By | 2 Comments

After months of PDF proof’s and double checking all the things, worrying over languages and trims and printing quality (most of which I have zero control over…) I’m pleased to announce that Eva The Adventurer is now available. And she’s beautiful.

When publishing a book, there were a few things that were important to us. The first was that any royalties support #teamMikaere, Joseph’s Goal and NKH Research. We’re all aligned with what we want – a cure for NKH Research. Specifically, a successful clinical trial for gene therapy in the GLDC gene (and, eventually the AMT gene) currently in progress by Prof. Nick Greene of UCL. We’re so so close, and we know with certainty that the more funds we can send his way the faster the progression. So being as transparent as possible, we get a royalty of around £1 a book. We’re sending that £1 to Joseph’s Goal, who will send it on to the team at UCL. Every book sold is literally helping us fund a cure for NKH. We’re determined.

The second was that our books support diversity. That includes ignoring a few standard gender stereotypes. Our princess is more likely to save herself than wait for her prince. She’s into doing all the things, not just the ones typically reserved for boys.

We’ve also tried to include more diversity within the representations of our characters. So yes, there are some blue-eyed blonde lovelies. And some Asian, redhead, black, coffee coloured beauties too. In our next book, we’re going to try to include those of different religions, too. It’s important that our little ones can see themselves in the literature around them.

The third was that Eva is (at this point) available in a whopping FIVE languages: English, Dutch, French, German and Spanish.  We have Swedish and Serbian in progress and a bucketload of others in the works. It was really important to me that the books were bilingual. We’ve tried to find so many books in English *and* Te Reo, but I think I’ve found a total of one. Womp. Sharing the love of languages and learning is absolutely a priority – so Eva the Adventurer is bilingual. And any future books will also, fingers crossed, be bilingual.

We’ve been really really lucky that so many people have given their time and energy to help us translate. All the translations (and translation checks!) were done by volunteers. So thank you – everyone, genuinely. If you left your name on the translation, you’ll get credit. Your name will be all fancy on the cover along with mine, and you’ll be credited on the amazon listing (which means you’ll be able to search your name on Amazon… it was still novel the first twenty times I searched my name).

So, if you’d like to support NKH please buy a book (they’re all less than £5, unless you’re in the states. In which case Amazon makes you charge stupid amounts for it, I got it as low as I could at $9.95!)

Buy an Eva Book

Thank you to everyone who has contributed, who cheered us on and loved us while we weather the ups and downs of NKH. You guys are the best x

On the eye test

By | No Comments

We’ve never been sure exactly what Kai can see. It sounds crazy, really, but when you meet him it becomes pretty clear. He doesn’t meet your gaze. There is no eye contact. And it’s not like he’s aware of you and is actively avoiding your gaze, it’s that we think he can’t see all that well.

Cortical vision blindness, is what it’s called. Where there isn’t anything really wrong with his eyes, but something wrong with his brain. We knew this already – when we were in NICU we knew the toxic levels of glycine were already causing damage to his brain. The MRI was bittersweet. Structurally, all the parts where there. Unfortunately some parts had damage. Womp.

The older he gets the more clear it is. Kai doesn’t focus on things. And when he did start fixing on things, he didn’t follow them with his eyes if they moved. Or, maybe he does? The tricky thing is we know his hearing is bang on. If you make any kind of noise, he’ll turn his head towards you, and his eyes will seek you out. Our ophthalmologist thinks his ears are over compensating for his eyes. It’s crazy. So while we think he’s following with his eyes, he’s actually following with his ears.

Here’s what we do know – Kai can see light. If you flick a light on or off he reacts. So that’s nice. I’m pretty sure he can see movement, too.

But the rest of it? We don’t know really. But we do want to know, as does our neurologist and our ophthalmologist.

So we took Kai out to a fancy eye hospital in East London and had two eye tests done at the electrophysiology department. One was to check if his retina was detecting light (called an Electroretinogram, or ERG) and one was to see if his optic nerve was receiving any signals (called Visual Evoked Potential, or a VEP).

And this is all well and fine. Except that Kai had a seizure right before we walked in to the appointment. Poor little guy. Usually he’d sleep it off as his brain recovered. We’re lucky that the ERP could be done while he was asleep.

Awkwardly, it did mean I held his eyelids open for part of the test.

We had to wake him up for the second part of the test, the VEP. I felt so horrid, but it had taken forever for us to even get this appointment (I hate that I’m still quietly trying to justify it to myself now). So we woke him with a dance party – there were things stuck to his face and head and we kept him awake and flashed lights in his eyes. I can only imagine how terrible that was if all you want to do is sleep.

Le sigh. I was glad when we were done. It took a while for the results to come back, but long story short there is nothing wrong with his retinas. The VEP looks promising, but it’s hard to tell because the post-ictal stage interfered with how Kai’s brain was working and the readings they received.

So in a few months we’ll have to go back and do it again. Fingers crossed less seizures this time.

With all the electrodes...

On feeding Kai purée when he’s nil by mouth

By | No Comments

Our speech and language therapist (SALT) came by last week. I like her, she’s lovely. It’s her job to assess Kai’s suck and swallow, ensuring that it’s safe for him to feed. That his swallow is good and his suck solid and that we’re doing everything we can to encourage oral feeding in a manner that’s safe.

She decided that Kai should be nil by mouth. That we should put nothing in his mouth, that his suck was nonexistent (which we knew) and his swallow was unsafe. Kai would hold anything in his mouth in his cheeks. Or not even his cheeks, he’d drool it out if positioned correctly.

100% tube fed.

That was hard to hear. Also, completely impractical for us. Since he’s been ill, Kai has been maybe 98% tube fed. Part of having the ng tube is that we check each and every time we use it to ensure it’s in his stomach and not in his lungs. Every time. Because every cough or vomit could move the tube up his throat, and it could move from his belly to his lungs. If we put something down the tube and it was in his lungs, we could drown him. Nothing like an element of extreme danger when feeding your own child, hey?

But, to check Kai has to have something in his belly to aspirate – for us to draw up the tube to know it’s in the right place. If we don’t get an aspirate, you can’t just put things down the tube – there’s that risk of drowning.

So we do the aspirate dance. We reposition him, lie him on his left side, sit him up, push a small amount of air down the tube. We pull the tube out slightly and push it back down. If we still don’t get an aspirate (which is most of the time) what we would give him something orally till there was enough in his stomach to get an aspirate.

If Kai is nil by mouth, we’d need to pull the tube out and pass a new one. If we still didn’t get an aspirate (which is likely, because there’s probably nothing wrong with the tube), our nurse’s advice is to go into the a&e and get an X-ray.


No. Just no. I am not taking my kid into the a&e and exposing him to all the risks of the other sick children to get an X-ray and mistime all his meds 3-4 times a day because we can’t get an aspirate. It was the most impractical piece of advice I’d ever heard.

What we need is a gastrostomy, because with a gastro you know it’s in the stomach. It’s surgically placed in the stomach and has zero chance of moving with a cough or a vomit.

But we’re still waiting for that.

So, we very very carefully weigh the risks.

It’s the risk of aspirating something into Kai’s lungs by giving him something oral vs the risk of Kai catching something while we wait in the a&e waiting room, and the risk of increased seizures while his medication schedule is all out of whack while we wait on the hospital time.

There are other considerations: the risk of the tube moving into Kai’s lungs is not zero, but it is small. What’s more, if it’s blocking his airway we should be able to tell, in the same way we can tell when he’s working harder to breathe with the increased secretions of a cold. It’s not a 100% reliable method (and we don’t rely on it) but it’s something to think on.

The second is that Kai is recovering from a horrific respiratory virus. His body is exhausted and everything is out of whack. He’s lost some skills (womp) but we’re hoping it’s a transient loss – that he’ll regain those skills. What’s more, Kai had a seizure before our SALT arrived. She saw Kai for maybe half an hour, at a time when he was particularly low. Her view of his Kai’s ability to suck and swallow is based on that snapshot.

However, my perspective is based on hours and hours with Kai. Sure enough, later in the day when Kai was positively perky, he was showing much more interest in swallowing and sucking. The next day was even better, with him managing a dummy with enthusiasm.

So, I took a calculated risk and fed Kai some purée. Which of course he nommed down like a champ. It wasn’t a lot of purée, maybe an ice cube amount, and it wasn’t pre-illness standards, there was a second swallow to clear what was in his mouth, but he took just enough to enjoy himself and to get an aspirate.

This is one of those moments where I hear what our medical professionals are telling us, and I absolutely consider it, but then I look at Kai and figure out what is really best for him.

If Kai is awake and aware and doing just fine, and managing his secretions, sure, let’s try purée or a bottle. Just a small amount, because I don’t fancy tiring him out eating. But enough to get an aspirate and for him to enjoy the sensation of food in his mouth and for him to use the muscles required for sucking and swallowing.

If Kai was drowsy, or had a seizure earlier in the day or was maybe a bit less with it, I’d never try feed him purée. I might try a tiny amount cooled boiled water if I thought he was awake and aware enough to swallow it (if he aspirated, cooled boiled water is going to be less harmful in his lungs than say a mouthful of chickpea and sun-dried tomato purèe).

If I couldn’t wake him, and he wasn’t managing his secretions I wouldn’t even try the water. I’d take him into a&e for that X-ray.

I’m not an idiot, despite how our medical team dole out advice and insist they know best. My problem is they see Kai for a short amount of time, a tiny snapshot, and make huge sweeping decisions that I’m expected to follow without hesitation or argument. I’m meant to trust our team implicitly.

But they’re just people. Who are sometimes wrong, who don’t look at the big picture and who don’t have the perspective I do. They’re also bound by NHS policy, which is designed for the cost saving average, rather than the wellbeing of Kai specifically.

Becoming a special needs parent is about becoming an expert in your child, and in advocating for Kai, I perhaps stand up to our team more than other parents do. Or at least I get that impression from the manner in which I’m treated when I disagree.

So. I’m feeding my son purée when he’s been declared nil by mouth.

I don’t enjoy being in this position, but hey ho. Bring on that gastrostomy, hey?

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

By | 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.

On Eva

By | No Comments

I wanted to take a break from sharing our illness woes for a minute (we’re still in the trenches!) – since we’ve been housebound I’ve had some time to move a few projects along during nap time. One idea was a charity children’s book, where all profits go towards NKH Research. So I made it happen. It’s been a few months in the works, wrestling with illustrator and trying to simplify text.

You guys, meet Eva:

She’s the star of the charity book and she is *awesome*. She’s an adventurer, who fancies being more than a princess. She has a huge imagination and wears a dress and still does all the cool things. (Gender stereotypes were never my forte).

One of the things I wanted to do was make sure it was available in all sorts of languages, I wanted this book to be bilingual. And thanks to several volunteer translators (thanks you guys!! You’re the best!), Eva and her book will be in THIRTY TWO other languages! I’m so pleased, and grateful to everyone who stepped up and helped translate my little book into something more. (If you’d like to help translate into a language you speak natively, let me know! All languages welcome).

Even more exciting is this week I got the very first proof of the English version back! I was super excited to see it in book form!

It looks ace in physical form. I’m so pleased that a project that was just floating in my head is finally coming together. I’m hoping a few versions will be available on Amazon before Christmas. Keep an eye out okay?

NKH – were coming for you. We’ll fund a cure one way or another.

On Going into Day Ten

By | No Comments

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.

On still waiting for the corner to turn

By | No Comments

This past week has been tough. I’m going cabin crazy, but couldn’t possibly leave. I’m sleep deprived, on edge and the whole house is emotional right now.

Kai is still sick. The 3-5 days thing was bs. We’re doing NKH bronchiolitis- the kind that’s never ending, the dig deep marathon kind of ill. I’m over the fever spikes and mucus vomits and the suctioning. We even had to start oxygen yesterday, for a bit when Kai couldn’t manage to hold his own o2 levels.

Also, Kai is having crazy seizures. We’ve gone from 10-25 seconds to a minute and a half seizures. What was maybe two or three a day last week is now twelve a day, minimum.

And they’re violent. Kai is now very aware of them and will cry in the middle before he’s swept along with the shaking and jerking and tense horrid all of it. It stops when his brain can’t handle anymore and it konks out.

And as I’m holding his little body and crooning to him I’m crying too. Watching him suffer is tough. Everything comes second right now. I haven’t showered and my flat is a bombsite and breakfast happened way past lunch time… I’m too focused on Kai. Too consumed by his pain to do anything more than be right next time him.

I spend my down time googling more epilepsy research. More about seizures and what else can we do? We already listen to Mozart K448. He’s already on DHA (thanks Omega 3).

Neurofeedback is our next thing. I hope, with a longing I can’t even explain, that it helps his seizures. (Again thank you to everyone who has donated. If you’d like to donate to therapy for Kai you can do so at justgiving.com/crowdfunding/help-for-kai )

But while we’re looking for the next thing that will help Kai, I can’t help but feel we’re fighting symptom fires and not the cause.

I hate NKH, so much. It’s horrid. Come on UCL researchers. We’re cheering you on. You can do it. Make gene therapy work for NKH. Please.

On managing bronchiolitis

By | 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.


On the first hospital visit of flu season

By | No Comments

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.