Tag

wellness

Nov 26
1

On the pink dummy

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Mikaere still uses a dummy, he finds huge huge comfort in it. He’s even able to ‘ask’ for it by making a sucking noise. At this point, if this is the one thing he can ask for and something he finds comfort in, he can have one as long as he wants it. We’re working on hand co-ordination so he can push it back in if it’s falling out (OT loves the dummy motivation, for sure. We practise putting the dummy in a million, billion times a day).

We use NUK dummies, which conveniently come in several sizes. I ordered some from amazon (using Amazon Smile for Joseph’s Goal). Some cute, gender neutral ones.

However what came back were some cute pink chickens. I attempted to return the said pink ones, but amazon said keep them, and we’ll send out the right ones. Okay, that’s cool. Except the new ones weren’t gender neutral either. It was more pink chickens.

At that point I figure fuck it. No one cares if Mikaere is using a pink dummy, and now we have four of them. Pink dummies, just as good as the gender neutral ones it turns out. Gender stereotypes can suck it.

Nov 19
0

I’m still pondering grief

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Death is natural. It’s as natural as living. We all die, we all know someone whose died and we all will die. One day. I’m mulling over death, and grief. Forever and always, I think. Is our grief compounded because we don’t live in villages anymore, and we don’t see death in our day to day? We hide away death, we have a funeral that lasts no time at all, we eat little sandwiches and say “I’m so sorry for your loss”. And then we grieve in private, smushing down those feelings we have as we try push through as if we’re fine? Untouched?

I wondered if people who work in funeral homes, doctors in the special care units, nurses in hospice, who deal with death on a regular basis have a healthier grief management system. Do they have a healthier emotional grieving process because they’re exposed to so much more grief? (I asked… I don’t think they do. The several people I asked said it was hard, but it wasn’t their personal pain. Plus they felt like they were helping people, making a difference. I guess having a virtuous purpose relieves some of that emotional weight).

As you can see I’m trying desperately to wrap my head and heart around death, considering we’re surrounded by it. Death is happening frequently to kids we know and love.

If death is natural, why do we fight feeling grief? Do I need to fight grief? Do I feel more grief, considering it’s children who are dying? Children we work so intensely hard to keep alive? If they lived longer, would I feel as hard done by? If they lived fuller lives, if they were less disabled? As horrid as it is, when an adult is sick, or has passed in my head I think, as an adult they had the opportunity to live. They traveled or loved or did whatever it is they wanted to do – they lived. They had time, they had years to fill with life. Our kids don’t have the same opportunities.

Is living and loving and having years and years before you die more natural? I think we have the expectation that that’s the order of how things are meant to go. Does that make it more natural though?

It hard to come to peace with loss. Loss is unavoidable, we’re attached to people and things and outcomes and expectations. I feel like grief is the weighted opposite of love. That the love that I have directly influences the grief I have… but if love is a natural as breathing and we feel such deep depths of love for our children, is grief natural too?

My question, I guess, is how do I survive this? How do I protect my heart from all the grief? How do I do that while still being open and part of the NKH community, while still loving all those other little terminal children? And if I’m open, if I’m vulnerable, how do I survive all the losses? The losses that keep coming?

I don’t have answers. I’m feeling what I’m feeling. I’m struggling, hey. The grief, it’s a real thing. Holding my boy a bit tighter today.

Nov 16
0

On our Seatbelt Medical Alerts

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I’ve talked about medical alert car stickers a while back, for alerting emergency response if there was ever an accident that Mikaere was non-mobile, non-verbal and an epileptic. It says in red Nonketotic Hyperglycinemia, so they can’t miss it. It also says Glycine Encephalopathy so they don’t confuse it with Nonketotic Hyperglycaemia, because you know someone’s in a rush that’s what they’ll read and if I’m not there to advocate for my baby you can bet they’ll test his blood sugars unnecessarily.

Anyway, what I wanted to say is that I found these medical alert seatbelt straps, for both the buggy and the car seat. They live on the straps, so we don’t need to remember them. Inside there is a little card with our details, the basics of his diagnosis AND a link to his medical care plan (essentially our cheat sheet).

It’s such a huge thing, my fear about not being able to advocate for Mikaere. About all those what if scenarios. I feel like we live in that space where all the unlikely things happen (a weird kind of luck?) and I want to give him the best shot I can.

So, seatbelt medical alerts. He’s got one on his car seat, and one on his buggy. A simple easy thing we’ve done to help stave off the worst case. Worth it, hey?

The place we got ours no longer sells them (womp!) but there are other places like here or here.

 

Nov 09
0

The winter season

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Oct 26
0

On the first hospital visit of the season

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And just like that our little man is back on oxygen, working overtime to keep his o2 levels up (and failing). It’s the first stupid cold of the season. We had a nurse overnight and when I walked in this morning she was just getting ready to wake us – Mikaere’s o2 level was sitting at 89%. Typically it’s at 99% – 100%. 89% is LOW. Lower than I’d like, lower than anyone would like. And you could see it. My baby was struggling to breathe. His breath was fast and shallow, he had a tug and an intercostal pull. He was working overtime to breathe.

We have tanks of o2 sitting in the spare room for moments like this, and I pulled one out, grabbed an o2 mask. It’s been forever since he’s needed o2, and you can tell, because the mask is too tight on his face. He’s outgrown the paediatric baby o2 masks. Regardless, it does the job. I watch with relief as his o2 climbs back up to more normal levels, settling at 96%. In the safe zone. He relaxes a little, he doesn’t have to work as hard. Poor baby has a temperature, and we give him Calpol.

I take pause. Get dressed, say goodbye to our night nurse. Sam and I discuss whether we should go into hospital. He makes coffee and I think about calling our community nurse. His levels are fine on o2, but he hasn’t need o2 in I don’t know how long. He’s clearly got a cold of some kind. If it’s a cold, we probably could manage it just fine at home. We have o2, we have stat monitors and suction machines. He sounds a little rattly, but I’m pretty sure it’s all upper airway.

If I call our community nurse looking for reassurance, she’ll ask us to go into hospital. Go into hospital. Complex needs. Difficult case. Better safe than sorry. Go into hospital. They always tell us to go into hospital ‘just to be safe’. Everyone is scared of taking the chance to say does he really need to go right now? What are the risks? Benefits? It’s all go into hospital, and go now. The risks of being wrong is too high.

But the hospital isn’t safe for us. Mikaere could very well catch something else from the hospital. Something worse. Plus, it’s loud and tiring and disrupts our routine, and I’d really like NOT to spend our Saturday in the A&E.

In saying that… he hasn’t needed o2 in forever.

I make the call anyway, knowing she’ll send us in and alert the paeds registrar for us. Also, on a Saturday morning at 8am, none of the other kids have had a chance to hurt themselves yet. Their parents will just be waking up and they’ll take longer to decide to take their sick kids into the A&E. If we left in the next 15 minutes, we’d make it in just after the shift change when the paediatric A&E is quiet. I mean, if you’re going to go in, might as well time it for non-peak time, right?

Sure enough, our community nurse said to go in.  So off we go. We’re on our way into hospital. 🙁

Oct 24
1

On yoga and safe spaces to share

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I’ve started going to yoga. There’s a lady who does it in our local park for a fiver. When it’s warm enough, we go and we stretch and move and practise our yoga. I am not very good, but there is no judgement and my body feels better after. So off I go. Today there was a reading. I missed the beginning, I was in my own head.

But I caught the last bit, and it basically came down to don’t be afraid to feel what you’re feeling. Be vulnerable, explore your emotions.

I tend to bite down on my emotions. My logical, intellectual side is more mature than my emotional intelligence for sure. I usually only express those emotions in safe places, like therapy, or at home with Sam. Not in public. Definitely not in yoga.

But as our instructor urged us, I cautiously settled my mind, cleared my thoughts and gently took a peek. And then I slammed those feelings way way back into a tiny box and pushed it as far away from my brain as possible, bringing my thoughts back to the present immediately. The feel of the mat, where my body was grounded, the (more ragged than gentle) breath in and out. What I could hear. I thought frantically of what I was going to eat for lunch that day.

Fuck exploring those feelings at yoga.

There was only two of us, that day at yoga. And we chatted at the end. The reading came up, and the other girl said she really enjoyed it. It was helpful for her. She was feeling some residual conflict with an unbalanced friendship and was able to gently process her way through and let it go. I listened, fascinated. How amazing, genuinely, to have that be what needs processing. How healthy. I was jealous. Sure enough, the conversation turned to me, and what I thought of being vulnerable and open to feeling what I’m feeling.

I said it was difficult, because when I explored my feelings that morning what I got back was ‘please don’t die, please don’t die, please don’t die’ with such hope and desperation and love, it was overwhelming. My very rational fear of my son dying and it being a very real possibility is always right there just under the surface, it’s intense and overwhelming.

I had tears streaming down my face, and they were both taken back a bit. They clearly weren’t expecting this. They don’t know me very well, and they don’t really know me as the lady who has a son with a terminal metabolic disorder.

And then we did that dance. The not quite pity dance, but the ‘theres a definite need to comfort me but they don’t quite know what to say’ dance. The poor girl with the friendships felt that her problems weren’t problems (but they are, my problems don’t take away from anyone else’s problems) and they expressed how important it was that I look after myself and practise self care and how amazing and strong I am for parenting like I do.

I moved the conversation on to less emotional ground because that dance is awkward for everyone, despite the kindest of intentions (they really are the nicest of people).

Side note: if you’re at a loss for what to say, say “that sounds really hard. How are you feeling about that?” or if you don’t want to go deep and meaningful, “That sounds really hard. How is your son doing right now?” because chances are he’s fine and it gives me a chance to move the conversation to the positive.

We left shortly after, and my grief lingered all day. Long story short, yoga is not the place to explore all those emotions if you’re a special needs parent with a child who as a terminal disorder.

I’m grateful we have access to therapy and safe spaces to share. I definitely won’t be exploring all those feels in yoga again, that’s for sure.

Oct 19
2

On the hip X-ray

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Kids with low tone are susceptible to scoliosis (this is where there ends up being a sideways curve in your spine), hip subluxation (otherwise known as a partial dislocation) or hip dysplasia (where the socket doesn’t fully cover the joint) – it’s not awesome.  Apparently all three are painful (womp) and scoliosis can cause all sorts of eating problems (with your insides being stretched/squished by your spine).

There is a not a lot of prevention that can be done in kids with low tone… all the of the early intervention strategies are movement, exercise and positioning. But with kids that are like ours… what do we do? The NHS promotes positioning with things like sleep systems and regular (read: constant) repositioning throughout the day but really – that doesn’t prevent much. Exercise and strengthening the muscles that support the spine is whats needed, but that’s not helpful

Mikaere has low tone. He’s at risk of scoliosis and hip subluxation/dysplasia as a result. And you can see it, in the way he holds himself, how he struggles to stack his body the way that we do naturally – just how easy it would be for things just to misalign.

We spend all day everyday repositioning. It’s in how we hold him and how we move him and how we put him down, feed him and play with him. (There was a point in our first few days at hoe where I felt we were literally being taught how to be with our boy.  Every single moment with him is an physio/ot/development moment where we teach his body and reposition his body with an eye to prevention. Holding his wrists, repositioning his knees, encouraging him to turn his head one way over the other, it’s never ending).

Positioning is one of the many things we think about constantly. Because that’s what’s there is for scoliosis prevention – repositioning and supportive seating. That’s to say, it’s the only treatment until you get to full body torso braces and surgery.

So we reposition. We stuff supportive pillows and tubes and straps down the backs of chairs and his carseat and line them along side his cribs.  And every six months to a year he gets a spine/hip X-ray. So we go (if I’m clever I’ve paired the appointments with something else in the hospital). We X-ray. And we wait for results.

Our Physio knows it’s coming but we’re not ‘bad’ enough yet for a referral to orthotics.

This time there was no news. His hips don’t show any signs of sublaxation (hurrah) and his spine is still under the threshold for scoliosis treatment. Phew. We know that we’ll eventually be referred to orthotics, but we haven’t reached the ‘its bad enough for orthotics’ point yet. So we wait. We reposition. We put Mikaere in the stander. We hope.

So hey ho. Onwards we go.

Oct 10
0

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!

 

Oct 08
0

On the improved head holding

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I remember way back in September 2017 I was sitting in a group of ladies (a mix of therapists and special needs mums) expressing my fear that Mikaere would never hold up his head. I’d been primed by our doctors not to expect him to head hold (smiling – one of those milestones a neurotypical kid hits at a few weeks was to be where his development stopped. That’s what we were primed for).

I held onto this fear for the longest time, right up until Kai, learning against Sams chest was able to hold his head upright without it falling to the side. And then, with support, he was able to control his head to look to the left and then back to the right, and then, AND THEN he tipped himself forward slightly and held up his own head (!!!!) – it meant his brain was making connections! His brain was learning how to balance his head and coordinate that with direction!!

At first it was only mere seconds that he was able to hold his head up without support. He was wobbly af, but those tiny two seconds, three seconds were everything. I posted way back when about those initial moments. Since then, with much work and support and physio (hours and hours and hours of it) Mikaere has come on in leaps and bounds.

With some convincing, he can hold his head up almost a whole minute and a half. This is game changing. It means when we pick him up, we don’t need to cradle his head like a newborn (which is convenient, because he’s no longer newborn size or weight, and picking him up requires two hands and the muscles to cradle 10kgs of baby).

It means, for a minute, I can hold him with one arm while I grab something. It means he can sit with us, and we don’t need to not worry about his head, It means when we’re doing physio, I have an extra hand to support his core or encourage using his arms. It means moving on from the newborn holds. Mostly it’s just been one of those skills that has come on that has changed the way we interact with him and we’re over the moon.

I wish I could have gone back to last year and told myself, with all the fear, to be calm. That Mikaere would hold up his head. It’s not neurotypical by any stretch, but my days it’s an awful lot more than we thought would happen.

To clarify, because I know without a doubt there will be some NKH parents reading this, who may feel that horrid sinking feeling because their babe doesn’t yet do the same (I am super familiar with that sinking feeling, for sure. It’s awful. That mix of happy and jealous but not jealous and sad with an unhealthy dose of grief… the special needs life is rubbish) – this head holding business – it’s not all the time, it’s not a reliable head hold and Mikaere is still very very wobbly. We’re not even close to the world of the neurotypical head hold.

Still, all clarifications aside, we’re pleased as punch with this little development. We see you little guy, we see you and love you and are so proud!