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On friends running the Dublin Marathon

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Today Shane, Maria and Kevin ran the Dublin marathon for #TeamMikaere and Joseph’s Goal.

Shane’s son Rauirí and Mikaere are friends from our local special needs playgroup. There is a lot of love between our families, we have an incredible amount of time for them.

Shane (and Maria and friends!), running for us today? That’s everything. They wore Kai’s name across their chests and ran 26.2 miles. A phenomenal achievement. Even more so, apparently one of their party injured themselves half way *and continued* still crossing the finish line. That level of determination is admirable.

They’ve also raised a whopping £2k for NKH research, and if I’m honest, that feels personal. That feels like over and above, and we’re grateful. Heartwrenchingly, overwhelmingly grateful. So to the Hoynes: thank you. Thank you thank you thank you, genuinely.

If you’d like to support this amazing achievement they’re fundraising on justgiving at: https://www.justgiving.com/fundraising/shane-maria

On making the boot work

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Fuck. I was putting Mikaere into his car seat when I felt his gastrostomy button pop out of his stoma. I heard his stomach contents dribble out and – fuck – was my first thought.

It was raining. It was just me and Kai and we were in the back streets of an unfamiliar suburb. I did a quick search, and sure enough, the nearest changing places facility (basically, a public toilet with a changing bench bigger than a baby changing table) is just over 15 miles away. Blah.

Mikaere’s button pops out all the time, and usually it’s no big deal. But we’re 40 minutes from home and I know he can’t have the button out for that long without it beginning to close. (Considering it was surgery to put it in, closing is not an option).

So, I do what I always do when I’m in a tight spot, which is move him to the boot of the car and take care of it. So I do, changing him, deflating the button and putting it back in with the gear we carry around with us in the emergency bag.

But I think how undignified for him. How cold and uncomfortable and just – not ideal for all of this to take place in the boot of my car, with the door pulled low to keep out the rain.

But the thing is, there aren’t enough safe places around where I could change him. Places with a long enough changing table to make it safe. Baby changing tables are everywhere, but they’re too short for him.

As I change him out of his vomity clothes, I think how awful that the quick, easy solution is here. Where anyone can walk by, where the breeze is cold.

I hate this. I hate that this is our life. The special needs life is just awful. I’m glad it was quick, but I wish we had the facilities nearby to manage without resorting to the boot of the car.

Also, as he gets bigger, the boot of the car isn’t going to cut it. What are we going to do then?!

On keeping my eye on the (Zonisamide) ball

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I feel urgent. I’m in the car, silently willing traffic to get out of the way. Mikaere’s fine next to me, kicking the shit out of some bells tied to ribbons in front of him.

There’s been a mix up, and I wasn’t top of my game enough to catch it, and now there is all sorts of hustling happening. There are four medications Kai can’t skip. Two for his glycine, and two for his seizures. We’ve recently switched services, a new GP which comes with a new pharmacy.  Except that our new pharmacy doesn’t call you when the medications are in, and also isn’t open on weekends (literally wtf).

So, I’m in a panic because we have exactly one anti-epileptic dose for the weekend, when we need at least four doses. Fuck. Missing them and facing a weekend of seizures (and all the joy that comes with them) is not how I want to spend my weekend.

But the anti-epileptic Mikaere is on is not your typical run of the mill anti-epileptic. That’s because the bog standard seizure medications are contraindicative with NKH.  So, he’s on a medication that’s not licensed for children under 6, and it’s usually down the bottom of the list of what a neurologist would try, because it’s more expensive.  What I’m saying is that it’s not a medication most pharmacy’s have on hand. It’s usually special order.

Conveniently, I called our old pharmacy, who have a box in stock (woo!).  But, to pick up the box, I need a prescription, and our GP is closed. So I call our CCN, who was all hands on deck for someone else’s emergency. Womp. Next step was to call our palliative Care team, who have a backup GP but told me to get in touch with our local hospital as technically we’re not in hospice on a symptom stay, so should be supported by our community team.

So I call the switch board of our local hospital, who put me through to casualty, who told me to ring 1111. I rang 1111 and spoke to a lady who could send a repeat prescription to only specific pharmacies.  Lovely. So I ring the four pharmacies they work with, and none of them have it in stock.

I call 1111 back, and speak to a doctor who took a history. Said that because the medication is usually only recommended for those over the age of 6 (and my son is 2) and so we’d need to be reviewed, with documentation that he’s been prescribed it.

So, I made us an appointment for in 30 minutes. We live 25 minutes away, the next dose is due in 20 minutes, so the three of hustle to get out the door.

Traffic is awful, but we manage. The doctor see’s us right away (and I feel terrible for wasting her time, showing her our latest review letter with medications + doses listed, and with the last prescription receipt) and then we make it to the pharmacy just before it closes.

I make up the dose right there in the car, and the dose is only 15 minutes late.

I’m relieved, but fuck you guys. That was hours and hours of hustle because I didn’t know our local pharmacy isn’t open on weekends.

Hey ho. I’m glad we worked it out in the end.

On the Lycra Suit

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Mikaere has hypotonia, which means he has low tone, or muscle weakness. Kind of. It’s not that his muscles are weak, and that he just needs practice to build up his strength, but that his brain finds it difficult to send the signal to ‘fire’ his muscles, so they can do what they’re meant to.

This means he finds it difficult to do things we take for granted, like hold up his head, or pull himself forward, or even lift his hands to his face (something even neurotypical newborns do).

One the things we do to help him is set him up in a Lycra compression suit. One benefit is that supports his core. It helps realign his spine and pelvis, giving stability and also provides better proprioceptive feedback, which is knowing where his body is and what it’s doing as he moves himself around.

The suits are custom made, so we went and got him measured up for a one. Spider-Man colours, just for fun.

We know this helps with his core stability. Fingers crossed it’ll help groove in some pathways in his brain and he’ll eventually be more stable without the suit as he is with it.

It’s just gone back to the shop for adjustments, so we’ll wait and see!

 

On Fighting for Nursery

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Well blow me over with a feather. After that initial post on nursery, I got a call from the early years teacher at Lovely School.

Here is what she said:

  • the offered package is not right for Mikaere. They can see that, and yes, it’s very clear to them that it wouldn’t be appropriate to put him in that package.
  • There aren’t very many children like Mikaere who have come in to Lovely School (I took this to mean: pallative). Focus on quality time has to be paramount to his package, without causing any harm.
  • They had an internal meeting and agreed, that they should go back to the council and advocate for Mikaere and other kids like him.

Ahhhh. I literally cried, big fat tears rolling down my cheeks. I had been HEARD! It’s so so rare that I’m heard, that what I say is given weight and considered.

I guess it helped that I piled them with paperwork and evidence before they left. With emergency care plans and seizure plans and symptom care plans and respiratory care plans. With his ambulance directive and his cheat sheets and medication lists and schedules and doctor contact lists. I saw that they were a bit shocked at the sheer amount of paperwork in our emergency kit (it’s the stuff we take everywhere with us). Apparently not all parents provide folders of paperwork at the first meeting.  But if they want a full picture of his needs, they need all of this. I’m grateful that I had documentation to support my previous concerns. Would they have listened to me if I hadn’t provided them?

Still, what matters is that I was heard. That’s huge.

Also, the relief that someone else was going to do the fighting was huge. I don’t have to gear up to go fight the immovable bureaucratic council and explain why my boy is more than a budget item.

I mean, I absolutely will if I have to, but I’m already fighting so many other services and it’s hard constantly being in conflict. I’m running on empty and it’s hard.

That someone else is going to take this on? That’s everything.

When I asked what package they were advocating for, it was more along what I had envisaged, which is a few mornings a week, with a focus on settling into the new space and forming secure relationships with staff and peers. We want him to be happy, and safe, and engaged with play. It would also mean that therapy would be done outside of school, which was a comfort to me.

You guys. The sheer relief at being heard, at not being the one to go into battle, but that Mikaere was still being advocated for was overwhelming. Tears. So many tears. Can all services be like this please? Still. We’re only at the first step. We’ve got a few more months to shift the council’s rigid perspective, Mikaere’s school package hasn’t been agreed as yet. But I’m already in love with Lovely School. They listened, took it on board and are acting accordingly with genuinely what’s right, even if it’s against the grain.

Let’s hope the council can see it too.

I’m so hopeful you guys. Hopeful that something will come together and it won’t be me having to go into battle again. Fingers crossed!

On the b:Generous Amsterdam + Paris Run

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Every year Sam’s work does a Be Generous week, that’s focused around giving back to the community. It means charity events and volunteering and donating. Every year there is a run in Amsterdam (and this year Paris too!) for #teamMikaere and NKH Research. That this is a regular run blows my mind.

People sign up to run around Vondel Park, and people get their laps sponsored. I love that they do this. There were a few cheeky sponsors this year, who increased their sponsorship rate for higher laps. Sam flew across to Amsterdam to run, which was amazing. He ran 5 laps, with each lap being 3km. I can’t really fathom running that personally, we’re super proud of him!

Overall, there were 28 runners in Amsterdam, and 7 in Paris. They raised over €5,500 for NKH Research, which is no small act!

When I think about all those people who ran, when I think about Chris R who organised the runs, and all the people who  sponsored/donated – I get teary.

This is personal for us. This is our son’s future, one which is not promised or even expected, and here are all these people who clearly are with us. Research is the only hope we have for an effective treatment, for a better quality of life for our son. That money is the only bottleneck is frustrating.

I can’t begin to explain what a comfort it is to know that there are people fundraising on our behalf. That we’re not alone, that we’re not doing this by ourselves.

You make us feel heard, and seen. You give us hope. So thank you. We love you guys, and we’re grateful you’re on #teamMikaere

On of course we ended up in hospital

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

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

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

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

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

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

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

——-

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

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

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

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

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

 

On an awful morning

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

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

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

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

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

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

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

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

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

On Going to Nursery

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As I write this, we’ve just come out of September. There were many back to school or first day photos in September. So so many.
We were also gearing up for a first day at nursery, possibly by the end of October. It was broached by our portage play therapist, knowing how I felt about being separated from Mikaere (which is no thank you never), and that at five, he was going to have to go to school (by law).

Knowing that it would take a long time for me to feel comfortable with Mikaere going somewhere outside my care, and into the care of strangers (especially when he’s on palliative care with a terminal disorder and every single day is precious), we went very very slowly.

Last year we visited schools. We talked about what some basic goals might look like, and what we’d be comfortable with. And then we went to the council and said, yes please. Please find us a place at this Lovely School here. That happened across months and months and months. It was very slow, and very gradual. Plenty of time for my mama heart to get accustomed to the idea of sending my baby to school.

Last week I hosted a group of professionals into my lounge where they presented an offer of placement: Five days a week, three hours a day between 12 – 3pm. His entire therapy caseload would be transferred to the school and how lovely was that?

Not lovely. Not lovely at all. I was shocked and made it clear that this package would not work for us for several reasons:

  • Mikaere is on a feed between 12pm and 2pm. That’s two hours where he is in a chair, relatively upright and still, else vomits.
    He typically sleeps from 2pm – 4pm, or has down time. He’s not typically very active in this time.
  • Five days a week is too much. He’s very easily over stimulated, and without lots of down time to compensate, he tires quickly and has seizures. Obviously we want to avoid that.
  • I’m not comfortable having his therapy transferred to school when I’m not there to oversee it. So much of what we do is lead by us, by me, because Mikaere’s well-being is so fluid. Seizures steal so much of his skill, so we’re can’t build on what he’s learnt week to week. One week he has full control of his limbs and his rolling. The next he’s floppy and can’t bend his elbow. The idea of not being there and things being missed without me to advocate for him (like I do now) is inconceivable. What’s more, if he’s meant to be having all this therapy when he’s on a feed or sleeping, he’ll never get the therapy he needs.

So no. It was not lovely, and I felt like this package had been designed by someone who did not know Mikaere, or his medical needs, and did not care. When I expressed all of this, it became clear it wasn’t the school setting it up, it was a council led, one size fits all special needs package. Have you ever heard anything so ridiculous – as if you could bundle the entire spectrum of special needs toddlers into one package. A package which does not suit Mikaere or me.

I was devastated you guys. Because right then my choices are put my son in a situation that I know will not work well and cause harm, or not have him go to nursery altogether and deprive him of lovely social interactions. That’s hard.

So I did what I always do when I’m faced with two unacceptable choices, which is accept neither and escalate. I asked for a few months leeway to review, and I wanted the name of the person at the council who works with Lovely School to arrange the packages so I could get one that works for us.

I think they were unprepared for me to do that. But you guys, I’m so tired of fighting.

I feel like I’m fighting every corner, for more for better for Mikaere. There is no part of his care that just works for him, no service that ‘just works’ like it’s meant to to meet his needs. (Just as a side note: I’m still trying to manage home visits from our gp, and his neurodisability service is in severe crisis to the point where they can’t offer prescriptions for medications he needs to keep him out of a coma. I’m fighting for the very basics of his medical care, so I’m not exaggerating when I say there isn’t a single part of his care that isn’t being fought for).

I’m so tired. The idea of gearing up for another fight against another immovable entity, another faceless group who doesn’t acknowledge my capability, my knowledge or expertise, who sees me as just another ‘hysterical mum’ – it’s exhausting and I haven’t even started yet. But I will. I will put my head down and provide paperwork and research and requirements and laws. I will escalate higher and higher up the ranks until it’s acknowledged that a one size fits all package is not appropriate for all children. That it’s not appropriate for my son, and that is unacceptable.

I will fight this fight, this extra fight in this extra corner, because I love my son, and he deserves the very best quality life I can wrangle for him.

So, off we go. Battle armour on. I can do this.

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.