Tag

hospital

Sep 24
0

On Ophthalmology

By | #teammikaere | No Comments

As everyone here in London is just Getting On With Life as if cover wasn’t a thing, there was pressure to take Mikaere into his Ophthalmology appointment. You can’t really do ophthalmology over zoom, and it’s been two years so… yes. With much anxiety and mask wearing (even Mikaere) we went and saw his ophthalmologist.

Mikaere has CVI (cortical vision impairment). We know that. It’s not clear what he can see, what connections are getting through to his brain. There’s also an issue with the tone of the muscles around his eyes, which means one eye floats in a bit (it’s called strabismus). We also found out this time that his eyes are oval shaped – called astigmatism. That’s not NKH related, as Sam has that too. Mikaere is also long sighted. So it’s all a bit complicated, but mostly fine.

The lovely ophthalmologist looked at Mikaere’s eyes, and shone various lights and made some decisions. Mikaere thought it was generally hilarious, and was very cheeky, holding still just long enough for her to almost get her readings, and then turning away with a laugh (he thinks he’s hilarious!)

Anyway, the short of it is Mikaere’s getting glasses. Again. He actually had glasses briefly almost two years ago, but after a while he refused to wear them. The ophthalmologist then said it’s likely that his eyes changed shape and the script was likely off. He was right, I guess.

But awkwardly because of Covid, the spectacle dispensing office was closed, and so we need to wait for another appointment to have a fitting.

Still, I feel like it was good to go, and novel for Mikaere to be out and about and meet people outside our bubble (!)  I guess stay tuned for the glasses reveal?

#disability #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #someoneFundACure #cureNeeded #disabledparenting #disabled #disabledfamily #complexmedicalneeds #metabolicdisorder #nkh #spectacles #strabismus #astigmatism #eyeCare

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?
  
Sep 07
0

On a hospital visit

By | #teammikaere | No Comments

 We left the apartment, first time in over 120 days (17 weeks, or 4 months), thanks to some unavoidable in-person hospital appointments. It’s been a long, stressful morning, and I’m sitting in a waiting room by myself. Mikaere’s had a seizure seconds before he went in (why is it always so hot in waiting rooms?! Pretty sure the warmth triggered it) and I can hear Mikaere breathing, in the little haematology cubby. The nurse is giving Sam instructions, and I’m holding my breath waiting for the cry that’s certain to come when the nurse tries to takes my babies blood. This never gets easier.

It’s worse, with covid. This is the first time we’ve been outa and my anxiety is sky high… why aren’t people wearing masks?! Why wear a mask if it doesn’t cover your nose?! I’ve spent all morning screaming “GET AWAY FROM MY IMMUNE VULNERABLE CHILD!” in my head. Wear a mask. Even outside. Any time you might possibly come within a two metre range of people (like on a FOOTPATH) wear a mask! It’s not hard. You could be literally saving someone else’s life. Put another way – if you don’t wear a mask, you could be killing a vulnerable person, like my baby boy. You don’t know, you could have covid. You could be putting people like Mikaere at risk. Wear a damn mask!

Leaving was made easier because we were running late. The urgency to get in the car with all our gear made stepping out the door easier, and it wasn’t until there was a guy (without a mask!) arguing about our parking spot that my deep distrust of other people came to the fore.

I hate this. I hate being out here. There are so many people, and so many people who aren’t social distancing or wearing a mask who clearly have the privilege of health, of not worrying about if they get sick, who don’t care about other people. That is not us, and I worry. This doesn’t feel like a nice jaunt out, it feels scratchy, and uncomfortable and risky. I feel panicky anytime anyone comes remotely close to us.

But we’re here because we need to be. We have appointment after appointment (metabolic and bloods and orthotics and radiology) and they all needed to be done. We’ve crammed six months of appointments into one day, one visit, to reduce the risk.

Mikaere’s squeal pierces the silent waiting room and I find it hard not to cry. I hate this. I can hear that’s he’s miserable and I’m rooted my chair, I can feel his cries through my chest. God, this is awful.

There’s a pause. They’ve fucked it up, I know it. That cry was too short. I know he’s a hard stick, and he’s so much bigger and he wriggles more. I’m not wrong, and a few minutes later there’s another scream. He’s distraught and I’m sitting a whole room away. Oh god, I hate this. I hate that he’s in pain, that we’re causing this just “for to check” and just, fuck.

I hate that we’re in a world we were don’t feel safe. Where people aren’t wearing masks, and social distancing, where my baby has unavoidable hospital appointments and has had so many needles in his arms and hands and feet that his veins make it impossible to retrieve blood.

I am not loving the world right now. It seems cold and cruel. I’m crying. I hate that this is our reality. The special needs life can suck it so hard.

Jun 19
1

On the A&E during lockdown visit

By | #teammikaere | No Comments

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!

Feb 02
0

On the Respiratory Care Plan

By | #teammikaere | No Comments

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

By | #teammikaere | No Comments

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.

 

Aug 16
0

On the vomiting & the PH Study

By | #teammikaere | No Comments

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.

 

Jun 12
1

On making hospital appointments efficient as possible

By | #teammikaere | No Comments

Hospital visits are stressful. Today we had an appointment with our epilepsy paediatrician that ended up being a two and a half hour visit. Not with the paediatrician (in fact, our appointment had been rescheduled without us knowing, so we were squeezed in between patients. We carved out half an hour of someone else’s appointment. We should have hand an hour with her – I’m frustrated!).

Needless to say, I went in armed with a list. I had the cheat sheet ready (mainly with a printed a4 sheet with a list of medications and dosages so we don’t need to waste time writing them out) and a list of things I wanted to cover.  We talked fast. About Mikaere’s seizures and med changes and vomits and dropping a weight percentile, about referrals to respiratory, Gastro and a developmental dentist. He had a rash on his face, and needs bloods for his metabolic consultant and a hip X-ray for his physio and a strength/needs assessment for his educational psychologist. She measured his head and listened to his chest and felt his liver.

We got a lot done, and as I wheeled Mikaere out (with the rain cover on to keep him from coughs and colds and germs of everyone else in the hospital) I had a new list of things to chase and follow up.

First a nappy change and a flush, and then to the paediatric bloods room. I liked this hematologist, his name was Rafal. He was experienced and didn’t have to prick Mikaere several times. He used a butterfly needle to collect blood in an adult tube (the red one; with no added mixes) and decanted into the smaller bottles. I like that, it meant it was quick, and less damage was done to my boys arm. Mikaere was a trooper, no tears, no drama. He even had a smile for Rafal. I appreciate that there was no screaming, and Rafal did everything he could to reduce the pain and reduce risk.

We paused in a side corridor so I could give meds and put then feed on, then to visit the CCN (community care nurse) to pick up some giving sets (that’s another fight we’re fighting, as nutricia have changed their giving sets again and the new alternative doesn’t work for us) and some catheters and to get a form signed.

And then onwards to X-ray, to look at Mikaere’s hips for hip subluxation. Mikaere was well behaved, and tolerated it like a pro. I laughed when he peed all over the table (I’d warned the radiologist he would). And then another flush, and home again to meet our hospice nurses.

But this is what it is for us now, I work hard to ensure our visits are super super efficient. That bloods and xrays work alongside other appointments (ideally on an off day so we’re not waiting alongside other clinics). It also means we’re not there all the time, keeping our hospital visits to a minimum is always a priority for us. Reducing risk of catching something from someone else.

It’s hard, and I power through the day. But this is what our day to day looks like. This is our ordinary at the minute. I hate it, hate it hate it hate it. But it’s what we do to keep our boy safe. So hey ho. Onwards we go .

Nov 14
0

The Cheatsheet

By | #teammikaere | No Comments

We have a cheatsheet for Mikaere. It goes everywhere we do, and is the first thing that’s handed over to nurses at A&E visits or admissions, doctors at appointments or any new therapist we have.

It’s literally a combination of every single question we’ve ever been asked, all the details people want to know, or didn’t know they should know. The nurses love it and the registrars love it too. Our consultants love it because it means we don’t have to go through the medical list and doses one by one. They can take the cheatsheet away, and we can use the appointment time more effectively.

It also means when someone asks something stupid, I know they haven’t taken the time to read the cheat sheet and I redirect them. It saves time. Theirs and mine and means I don’t have to fight to make myself understood, or worry that I’ve forgotten anything.

It’s also been helpful in other ways. The main being it signals that I’m a competent parent. That I know my child, I know his disorder, that I’m familiar with the medicalised setting and establishes that I’m an authority on my child.

It means that when it comes time to discuss an action plan, I’m included in the discussion as it’s taking place, not being told what’s going to happen after. It means when I disagree, I’m listened to, and my concerns are heeded. I can’t tell you how many times we’ve avoided being admitted because the cheatsheet gave me credibility when I’ve said no to admission.

The cheat sheet has just made our lives easier. For those that are interested, I’ve created a template here on google drive.

It’s the small things, hey? Cheatsheets. They make a difference.

Oct 29
1

On being in the A&E

By | #teammikaere | 2 Comments

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

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

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

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

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

—-

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

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

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

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

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

—-

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

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

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

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