On the vomiting & the PH Study

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Oh the vomiting. I feel like it’s one of the invisible parts of our life, but Mikaere vomits EVERY DAY. Everyday the gagging, and the vomit and the changing and washing and comforting.

We carry towels around with us (most which have ever so slightly off colour splotches). We have a change of clothes for him, and for us. Vomit and the discomfort of vomiting is our day to day, and has been since February 2018.

Can we just take a minute and talk about how awful that is? How uncomfortable for Mikaere, how sad and smelly and gross and just, awful?

How happy would you be, if you vomited everyday? Tasting the bile, feeling it rise up the back of your throat? Knowing that day after day you wouldn’t be able to keep anything down? And no choice but the vomit, not able to communicate that you feels nauseous, not able to move your body into a more comfortable position.

How is that acceptable? How is that quality of life?

It’s not. No one seems as upset about it as I am.  It’s taken a year and half for anyone to investigate. A year and half of me speaking about it with every single medical professional on our team, insisting that this is not okay, asking for help, asking what else we can do, asking for more for better.

Then our gastro follow up for the gastrostony that we had in Feb 2018 was set for April 2020. Because the gastro Service at our local hospital is chronically underfunded and there is no consultant to see us.

This week we finally, finally had a ph study. It’s the very first step in understanding how much vomiting/reflux is happening. It’s only for 24 hours and requires a prob is put down Kai’s nose (and an X-ray to confirm correct placement).

It’s frustrating. We already know he’s vomiting, we already know he has reflux, and we know this because we take detailed logs of everything Kai does. I’m not sure whether they think I’m a hysterical mama bear whose making it up, or whether my data is just inaccurate (or are they just doing their due diligence?) but regardless, a step has been taken. Something has happened, and I’m hopeful that that something results in a review which will then kick off a bigger investigation.

My fear is that there is no reason. Or the reason is something stupid like the surgeon hitched the gastrostomy too high.

We’ll see. I’m grateful something has happened though, even if that something was a redundant waste of time. If it means someone is looking at its data and recommending a review, it will be worth it.


On goodbye formula!

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One of the things that happened in the past year was we got Mikaere off formula and onto the blended diet. It wasn’t an easy decision and there were a few heated discussions with our dietician, but the long and short of it is that nutritionally complete formula had ingredients high in glycine in it. I’m not feeding my kid the very thing he can’t process. There is one formula that is glycine free, but it has other side effects that make it not worth trying.

And so, off we went, easing ourselves into the blended diet. I kept extensive spreadsheets for working out calorie intake and micronutrients. I was bit overwhelmed but I started small. One meal a day, at first. Meat, vege, a carb/grain along with some fats (lots of fats, avocado, coconut oil, peanut butter). After a while I added in prunes (as a natural laxative, so we could stop using the horrid movicol) and then I started throwing in some Brazil nuts, as selenium helps is an immune booster.

We moved to two meals a day. He was vomiting less, and seemed more aware. He was tolerating it like a champ!

After a few months I added a breakfast – weetabix, with fruit and honey, with coconut milk. The fruit changes morning to morning, depending on what’s in the fridge. When that became part of the routine it was just the night feed. Porridge, mostly. More fruit, more honey, more peanut butter.

Then I got a bit brazen, and sometimes I’ll change it up and Mikaere will eat what we eat, but blended.

Sometimes if I felt like he could use the extra calories I’ll add in a put of coconut/chocolate pudding (a whopping 100kcal per 45g!) to his feed (it goes through the tube which is why it’s okay to mix meat with chocolate like some kind of magic chilli mix. He never has to taste it). Or if we’re out, an nice dollop of olive oil.

The great thing about this is he started eating oral tasters. We’d still put the blend on through the tube, but he’ll have a savoury/sweet course. Blended, to a nice easily manageable purée. Bangers and mash. Chicken and lentil dhal. Caribbean jerk chicken.

Dessert is usually chocolate pudding or a fruit/yoghurt purée (guess which one he prefers?!)

Overall he’s put on weight, and is managing MUCH better on the blended diet than he could on formula.

So, blended diet wins for us. I don’t fully understand why the blended diet isn’t more wildly supportive, or why we had to fight with our dietician. (I think it’s because nutricia, who provide the button refuse to state their equipment is safe with the blended diet, but it’s because they also provide all the milk formulas, so encouraging business away from their products would be bad for business. If a manufacturer can’t recommend a particular practice, then I guess the NHS can’t? Even though it’s most cost effective for the NHS, often better for the children and with less processing and packaging, better for the environment?)

The other stupid thing is that if it didn’t work with the mickey button (the button between the tube and Mikaere’s stomach that works a bit like a tiny pipe into his belly) and it got blocked, all that would happen is that I’d deflate the balloon, pull the button out, clear the blockage and put it back in again.

Anyway, I fought the fight and I realised that essentially as long as I’m not causing any harm it’s really up to me to decide what’s best (that comes with the caveat that I do my due diligence, discuss with our medical team and research the crap out of whatever it is I’m thinking of doing – I can decide whats best based on an informed opinion. I’m not a maverick, hey). And after all my research on the blended diet and formula, its perhaps no surprise we’ve switched to the blended diet. 
This by far is one of the best decisions we ever made for our boy. Hurrah Blended Diets!

On more weight gain

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I just did the first weigh in a month. At our last paeds appointment she said not to worry about his weight, he’s tracking close enough to the 20% line and that’s okay. I basically decided that if his medical team weren’t worried about his weight, I shouldn’t be.

My fear is based on the dietician making harsh calls about the blended diet based on his weight gain, which to be honest, shouldn’t be. As his parent if there is no concern from his paed and CCN, then I definitely shouldn’t be letting the dietician freak me out with some half baked comments (and let’s be honest, she can inform us, but as parents we decide what he eats).

I feel like in the world of high-medicalised special needs there can sometimes be a power imbalance between professional and parent. The professional doesn’t always acknowledge us as experts in our children in our own right and often there is the expectation that medical professionals know best. I learnt early on that no one other than the metabolic consultant anything about NKH, and often doesn’t alter their typical plan to include it. No one knows more than I do about my son, and no one is looking at the whole picture but me.

There is the other times though, when the power shifts the other way. I know how to advocate and have no fear entering conflict to achieve what I think is the best outcome for my son. Mostly, I don’t need to Mama Bear anything. I’ve learnt that being brash and loud is not always the best way to get results and sometimes it is. And then sometimes you can ignore an email for three months and it’s no big deal.

So I stopped weighing Mikaere for a month, and what do you know? Despite all the vomits there’s a modest increase. Good job us!


On drama with buttons

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Ahhhh. Fuck. I’ve talked before about how Mikaere’s button is in the perfect position for him to reach when his elbows are supported on the floor (so anytime he’s lying supine). He has pulled it out numerous times, and even worse – the balloon has burst and it’s fallen out.  Womp.

As a bit of a back history: this is what a button looks like. Essentially, there’s a feeding port with a balloon that holds it within Mikaere’s stomach. You deflate the balloon when you put it in, and once in you inflate the balloon to hold it in place. These buttons cost about £400 a pop and should last 5-6 months.


In the last 3 weeks Mikaere has had three (to the tune of £1200. W.T.F). I literally don’t understand why they’re not lasting.  When I was trying to explain to our nurse what was going on, it was very confusing. In the end I had to write up a breakdown just to get my head around it:

– 14th – Button got pulled out in the carseat fully inflated. (Button A). Went into A&E for a replacement, which we put in (Button B)
– 21st – Mikaere pulled out his button fully inflated (Button B). I put Button B back in.
– 22nd – Picked up a replacement button (Button C) for just in case
– 1st – Mikaere pulled out his button (Button B) fully inflated. I put Button C in.
– 3rd – Button C had a leak and fell out. I sterilised Button B and put it in.
– 3rd – Button B also had a leak and fell out. I sterilised Button A and put it in, and taped it so it couldn’t come out.

Just in case it was hard to follow:

Button A – Currently in. Inserted twice.
Button B – leaked. Inserted 3 times.
Button C – leaked. Inserted once.

I’m getting really good at putting the button back in, but YOU GUYS – it’s always a moment of panic. It’s so terrible. First it’s because someone notices that Kai’s onsie is wet, and there’s a wet spot on his onsie right over his belly button (which is a weird place for a onsie to be wet). Whoever is nearest will jank up the onsie to check, and sure enough, the button is out and vomit is leaking out of his stoma.

It’s a bit of a race to get something – anything – into the stoma to prevent it from closing. We currently use leftover NG tubes. We have so many and they’re thin and easy to get in and tape. The concern is that if the stoma closes then 1) we’re back to the NG for meds and feeds (boo!) and 2) he’d need surgery again to put another button in. Considering the huge risk of general anaesthetic and the emotional upheaval of the first round, I’m not keen.

Once we have an ng in the stoma we can relax for a moment and figure out next steps. Sometimes that’s going into A&E if we don’t have a replacement button on hand. Sometimes it’s sterilising the existing button, letting it cool and putting that one back in. If we do have an unopened, sterile replacement we’ll usually use that.

But oh, putting it back in. It’s not as bad as the NG, but it’s not fun. Because typically Mikaere pulls out the button fully inflated, his stoma is sore and a bit tender. When I attempt to push a new one back in (deflated, obvs), Mikaere screams and clenches his abdominal muscles, essentially stopping me from pushing it through. I have to wait until he takes a breath in – when he takes a breath in his lungs expand and his abdominal muscles relax for a millisecond. Listening to your baby scream because of something you’re doing is horrid. It’s heartbreaking and I hate it. But it’s necessary, so necessary, so on we go. Eventually it’ll be in and we aspirate stomach contents up to make sure it’s in the right place (testing with a PH strip).

Having to do this 5 times in the past three weeks has definitely upped the daily stress factor of our lives. The most current button is physically taped to his body, so he’d need to get through several layers of hyperfix to the button out. We don’t have a spare at the minute, so I’m really really hoping he doesn’t pull it out. I don’t fancy a trip to A&E for another one.

We’ll see. Hopefully things will get better soon. Fingers crossed this one will stay in longer than a few days!

Update on the button + vomit

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Before Mikaere had his surgery, I spoke to anyone and everyone whose child has had a gastrostomy. They all said the same thing – it was game changing for their child. And while there was a lot of positives, I was unprepared for the epic amounts of vomit.

Before the gastro Mikaere never vomited. If he did, it was very very rarely and only ever when he was ill. Now? Now I have vomit in my hair most days. I have buckets of things soaking in my bathtub to get out the vomit stains. My carpet smells of vomit. My washing machine is on an endless cycle of things that are covered in vomit. My clothes. Mikaere’s clothes. Sheets, muslins, blankets, couch covers. Today Mikaere even managed to vomit over the recycling bag, getting (and I kid you not because I had to sort it) every single piece of recycling we had covered in vomit.

Vomit rules our lives right now. Please hold off on the advice giving – we’ve done everything. Reduced the feeds, slowed the feeds, spread them out over the day. It doesn’t matter whether it’s blended food or formula or dieralyte or even just plain water. Gaviscon can suck it. He’s already on omprezole. He’s always upright when we feed him, either reclined or in supported seating. It’s not directly after a feed, it’s about 2-3 hours after. I’m not going to consider a fundo (like I said – I’m not looking for all the advice here. I’m just telling you where we are right now. Yes, we’ve talked to the surgeon, our paediatrician, our gp and all our nurses know).

We think it’s because of the gastrostomy. With the way his stomach has been hitched to the abdominal wall, which means food goes in, and is forced (because of the way the stomach is slanted) straight into the top of his intestines. This has changed the way he feels when he has food in his belly and because of how his stomach is pulled (unnaturally up towards his abdomen) it’s put pressure on the lower esophageal sphincter, which is that the nice bit at the bottom of your esophagus that keeps your food in.

There is research that says a lesser curvature gastrostomy reduces the incidence of postoperative gastroesophical reflux (aka, vomiting because of the gastro – source) so for everyone due to get a gastro – you’ve been warned. Asked for a hitch with a low curvature and make your surgeon agree.

In the meantime, I’m at a loss. I don’t know if this is going to be a forever thing (I desperately hope it’s not) or whether as his body acclimatises to the new stomach position and the stress on his oesophagus he’ll be able to hold food down.

Blah is how I feel about this. Blah and heartbroken for Kai who hates vomiting. With a passion and cries his little heart out when it happens. It’s heartbreaking.

Stupid vomit. We’re over it.

On being post gastro

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We’ve had the gastro for a while now, and I was surprised at how some things have changed.  The biggest being Mikaere doesn’t have the NG tube anymore, which means there is nothing on his face. Spelling it out – when he’s in the buggy you can’t tell that he has a metabolic disorder. He looks neuro-typical.

This means that the attention he gets has dramatically increased when we’re out and about

The scared ‘there is something wrong with this baby’ looks and side comments and fear when people peer into the depths of the buggy has gone. Other parents give me knowing smiles (what is it they know? I feel like there’s a shared secret I don’t get) and people now want to ask about how old he is and how tall he is and tell me how precious he looks. That annoys me, because Mikaere hasn’t changed, just people’s perception of him. Initially I wanted to explain about his disorder, tell them in detail about NKH but I soon realised that one, they don’t want to hear it, and two it takes up waaay too much time and all I really want to do is finish shopping and get Mikaere home away from possible-germ-carrying strangers.

It’s not all bad though, Mikaere still goes for his nose when he’s upset, but we don’t stop his hands anymore. Which means he’s got full access to touching his face. We don’t have to pass tubes anymore and I’m delighted we’re not dealing with the screams from that. Not trying to get an aspirate has been liberating. We’ve started a pseudo-blended diet, which has been good for Mikaere, I think.

The wound is healing nicely, slowly but surely. I’m positive it would have healed even faster has Mikaere not pulled out his stitches yesterday. We’re a few weeks past the gastro now and the button is at the right spot for him to reach without having to support his elbow or move his shoulder in a big sweeping movement. It’s in the sweet spot of reaching. So reach he did and with one big yank had pulled the stitches off the top of the button and almost pulled the whole thing out of his stomach. I had a heart attack and my poor sweet boy screamed. Good thing we were already in hospital for another appointment. And rushed upstairs to the ward to find the on-call surgical reg, who pushed the button back in and restitched what he could.

So cheeky. Mikaere’s clearly been a bit more sore than usual and on top of that he’s not tolerating his feeds/meds as well as he usually would. Which means we’re in the world of all the vomiting. Like, projectile out the nose vomiting. All the time. Everywhere.

We’ve slowed down the rate at which we feed him, the volume and what we’re feeding him (no advice needed, is what I’m saying). Everything is gentle gentle. We vent frequently, the feed goes across three hours (previously took half an hour). He will eat a tiny amount orally, but no where near where he used to. So we spend a large portion of our days feeding.

I’m getting really good at getting baby food vomit stains out of things, too.

Hey ho. Give us a few weeks of healing time and I’m positive things will be better.

I can’t believe we’re on the other side. Mikaere has a gastrostomy. Hallelujah!

On the ward

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I’ve never been so grateful to be on the ward. Back to shared rooms and small cubby’s and nurses shared between three beds.

Mikaere tolerated his meds on a diarolyte solution. He tolerated his formula. He did NOT tolerate food. Womp. There was vomit. So much vomit. And with every vomit we tack a day on to how long we’re in here.

It’s not so bad though. We’ve got our own cubicle at the minute, having moved out of the shared room. We’ll revert back to formula at a rate he can manage (slow and steady). And our days are slow and easy as Mikaere recovers.

We take walks around the ward, and set up a rotation of toys from the play specialist. We read books and sing songs and take naps. (Best tip I ever got was asking for an adult sized bed instead of a crib. Mikaere doesn’t roll, let alone climb over everything so is in no danger of rolling off with the sides up. It means we’ve got more space to manoeuvre him, space for us to sit and a nice spot for a joint nap).

The other bonus is that we’re still doing the meds ourselves (it’s a bit of an ongoing thing, Kai’s meds are complex, and the nurses and the chart are always wrong, so we do it to make sure it’s the right med at the right dose at the right time).

We’ve also continued our at home nurse help, which has been amazing. Because the hospital nurses are there for emergencies, we haven’t had to stay the whole time – knowing that there is someone Kai knows and we trust has been amazing. It meant I was able to come home to sleep once or twice (a proper 6 hour sleep in a bed after a shower is pure bliss).

We’re in no hurry. We’d obviously like to be home, but this doesn’t feel like our other hospital visits. Mikaere is not sick. He’s not fighting for health. He’s not struggling.

There is the the occasional vomit while his stomach recovers, so when the surgeons suggest another day I’m not heartbroken. Kai is going to be okay, and once he goes a full day without vomiting we’ll be discharged.

Update: later that very day we went home. Five days end to end we were here, from fasting to discharge. I’d expected to be here at least a week or two, five days feels swift. Hallelujah we’re home!!

On coming out of surgery

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When the nurse came into the parent room and said Mikaere was 30 minutes away I let out the tiniest breath. When she came in 20 minutes later and said not only was Mikaere now in PICU, but screaming I wanted to cry. Screaming meant he was awake. Screaming meant he wasn’t on a ventilator. Screaming meant all the fear and worst case scenarios were not us right this minute.

I barrelled across the hall, washed my hands with lightening speed and rushed to comfort my baby. He’s cheeks were bare – no ng tube. He was covered in wires, and as he thrashed about he caught his hands in them.  His little fingers scrambling in wires to measure his head rate, his respiratory rate, his o2. Red, green, yellow wires. The white chunky ones for blood pressure, the cuff around his forearm. The probe for secondary stats. Tubes going to his cannulas. A nasal o2 tube. And there, bang smack in the middle of his belly was his new button, stitched into his lily white skin.

So many tubes. So many wires.

But the relief was overwhelming. He’s fine. He’s alive and here and very opinionated in his objections of what just happened.

Despite the wires I scooped him up for a cuddle – that’s the bonus of having been in PICU before. You know which tubes are precious and which aren’t and which to watch for when you want a cuddle. I wasn’t intimidated by the wires. Not even close.

And sure enough, once he had a dummy and was safely snuggled in my arms, he settled a bit and stopped screaming.

My beautiful baby. It felt like we’d gambled for an improvement of his quality of life and we’d come through. The relief really was overwhelming and I felt like I was constantly holding back tears. He was fine. He was here. No coma. No vent. Just baby outrage and cuddles.

As he calmed and we settled into the afternoon, everyone relaxed. We stepped back in the world of intensive care. We said hi to the nurses we knew, who knew us. They all marvelled over how big Mikaere had gotten. We knew the system, we knew the room. It was all eerily familiar.

Once Mikaere was on pain relief and happy bundled up in my arms, the weight of the world dropped from my shoulders and we relaxed.

It felt weird to be in intensive care relaxed. The last time we were here we were being discharged into hospice on end of life care. Mikaere got baptised in that bay over there, a just in case emergency baptism when we weren’t sure whether he was even going to make to hospice. That bay was where he met his Grandad Gedge for the first time. We spent Boxing Day last year over there, and hours upon hours in the bay we were currently in. This room was full of grief and memories. Our fears were all here. It felt weird to be there and not feel that. Mikaere was *well*, the most vulnerable moment had past and we were in PICU just in case.

I could feel the grief of other families though. I heard a ventilator beep and recognised it as an o2 drop. Maybe a blockage in the tube, maybe some suction required. I heard someone else crying over their baby. I heard a pump beep indicating that the syringe needed to be changed over, a mum try comfort her son, a support worker talking in hushed tones and a musical light show as a distraction attempt.

I heard all these things and remembered and was infinitely grateful that none of those things were Mikaere right now. We’d lived that before and instead my son had only observational wires and a dextrose/pain relief solution through a single cannula. That and his brand spanking new gastro button. All positive things. None of these things were dire, intensive care things.

Thank FUCK.

Even better, one of the consultants stopped by for a chat and some baby love. She mentioned that if they needed the bed we’d be the first ones to be evicted from PICU up to the ward. I loved her for sharing that. That if anything happened, Mikaere was the healthiest in the room. He’s never been the healthiest in PICU before.

And so we wait. We see how Mikaere goes overnight. How he tolerates formula. How he manages his pain. And tomorrow, fingers crossed, we’ll be discharged from PICU and make it up to the ward.

On between the MRI and the Gastro

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We saw him briefly. So briefly. We knew they were coming because we heard them readying him for transport. I was already standing to the side when the doors burst open. Our Tuesday carer, Wai, beside me.

He looked so little. He had a vent (horrid and wonderful life saving things that they are) and his eyes were taped shut. Two cannulas were in his feet.  Irritating, because we’d put numbing cream on his hands and inner elbows to help with the pain in going in.  His hands and arms were covered in red puncture marks where they’d tried and failed to get a cannula in. (Turns out the numbing cream is also a vascular constrictor.. fail).

He looked so little. So vulnerable.

Mikaere was being moved from the MRI clinic (an adult clinic which they’d commandeered for him because it was closer to the paediatric OR) up to theatre.

We rode up the elevator together and I gently held his tiny little hand. More for my comfort than his.

We stopped in the corridor near the OR – no parents past this point. Only patients and doctors. Saying goodbye a second time was equally rubbish. Still, I was grateful I got a glimpse of Mikaere. That so far he was doing okay.

We went down the hall to the Paedatric Intensive Care. We knew he’d be going there after and were told we could leave our stuff in the parent room.

It’s a tricky place, fraught with familiarity and grief from when we were there last year. I got flashbacks of Christmas and New Years. The microwave dinners we’d had on our knees, wolfing down food so we could go back into PICU. The tears, the quick power naps, the unbearable waiting that happened when we had visitors and it wasn’t my turn to be with Kai (it’s only two visitors to a bed, so turn taking is a thing). Mostly I remembered the fear. Of not knowing what was going to happen, of Mikaere sinking into a worse and worse hole. Of everything seeming so overwhelming and horrid.

I’m glad we weren’t under the same circumstances this time. Oh waiting. I willed time to pass quickly.

On Getting Underway

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I was left standing the waiting room with a handful of my babies clothes and his dummy, my heart in my throat. Walking away was rubbish, watching four strangers crowd around my baby, looking so little on the giant adult sized bed, blue gloved hands busy attaching probes and doing medical things as Mikaere lay there unconscious as we were ushered out the door. Leaving was hard. Trusting them to do their jobs and their jobs well when my little guy was asleep on the table… difficult.

I was unprepared for the leaving part. We’d been waiting so long for this all to finally go ahead, that I was more focused on tee-ing everything up, half believing it would, again, be postponed that when it was go time, I was unprepared. But there you have it, after months and months of waiting my son was right this minute being put under and I was being gently  pulled out of the cubicle.

I wanted to cry when we left him and I almost caused a motherly fuss – my fear was overwhelming. (I don’t know exactly what I’d be fussing over, the right to stay? It doesn’t make any sense, because I know we’d never be able to stay. Emotions – not always logical).

There was a girl on the ward last night, while Mikaere fasted. She must be 18, young enough to be on the paediatric ward but old enough have a 1 year old of her own. She’s dislocated her jaw and has all the fear about the pain of having it reset in place. I overheard a lot of her fears and anger and confusion. Hours of it. She desperately wants to see her baby but can’t get over the fear of the pain that comes with having her jaw reset. And until it is, she can’t leave the hospital.

I’m not getting down on her, because I was there when they tried the first time and I heard how that went. But at the same time, I think the moral of the story is there is a choice. A short, sharp spike of pain and its done – no more pain, or a long drawn out pain while you wait and sit with your fears and fuss.

The main thing for me was how her fuss made things difficult for everyone else. For her family, for the nurses who were trying their very best to help her with her pain, the consultant who was on hand if she wanted to try. Us, and everyone else in the room who silently listened to her process all the things.

And as I sit in the waiting room for the first of this long drawn out waiting process of my own, I feel like it’s best to just get on with it. Waiting is rubbish and my fear of it all going twisty and wrong is high, but there is no point making a fuss. I don’t want to be like that girl on the ward going on and on, when I have the power to emotionally move myself forward.  So instead I sit quietly and write you guys a blog post.

Mikaere’s under the general anaesthetic and is having an MRI. Up next, gastrostomy. I can’t sit still and I keep repeating that Mikaere will be fine. He will be. And I wait for the MRI doors to open.