Tag

Year 4

Feb 02
0

On the Respiratory Care Plan

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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.

Jan 31
3

Quality vs Quantity

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There is a particularly grim aspect of palliative care that I’ve been mulling over recently. I genuinely believe that the quality of life Mikaere enjoys is awful.  While he’s often comfortable (daily seizures + vomiting aside…), his quality of life is not even close to what we ourselves enjoy.  When you don’t put the seizures + vomiting aside – his quality of life is downright awful. Today Mikaere screamed after the seizure he had. The kind of scream that really hit you in the chest, that let you know what he was experiencing was painful, and he was desperate for it to stop.

Truth: I think that Mikaere would suffer less if his life was shorter.

Side note: I don’t plan on doing anything to make his life shorter, in anyway shape or form. I am his Mama and my Mama heart can barely comprehend that his life is limited, let alone consider shortening what little precious time we have with him.

But that’s the thing. If he had less days to suffer through, there would be less suffering. I genuinely feel like the longer his life, the more suffering he will experience. While I will never ever wish for his life to end,  I also don’t wish him to suffer, or to live a life of seizures and less. Less everything, less control of his body, less awareness, less freedom and independence and joy.

On the other side, by doing my very best to give Mikaere the best possible quality of life available to him, am I prolonging his life and therefore his suffering?

By doing my very best, am I prolonging his life, dooming him to more suffering?

I feel like I’m between a rock and a hard place. I’ll always want to do the very best I can for him, to comfort and care for him. But I worry by pushing him through all the extra therapy, fighting for more drugs, closer monitoring, fending off every potential downfall, that in trying to alleviate his discomfort the best I can, I’m unintentionally extending his life which is filled with so much suffering and pain.

I don’t think there is an answer here. My mama heart wants to ensure my babies life is as comfortable and happy as I can make it, but logically, asking myself what I’m prolonging, to try look at the macro as well as the micro picture…

The palliative special needs life sucks so hard.

And then I think – neurotypical parents don’t do this. They don’t need to wrangle with the idea that their baby is definitely, 100% going to die. Whether their best parenting is going to cause their child to suffer more seizures, and vomits and painful everythings. That their child is going to suffer because of them.

Again, palliative special needs life sucks so hard.

Update: Here’s where I’ve landed with this – I don’t have an answer, but my Mama heart says I should do everything I can to help him live a better, comfortable and happy life. Sometimes that’s going to mean therapy he screams through, in the hope that long term it pays off (and I know, I’m gambling that there will be a long term). It’s going to mean to more awful drugs that make him vomit and suction catheters down his nose and an untold number of needles and blood tests. But I can’t do anything other than my very best to comfort him, and give him his best shot at life. I think I’m always going to wonder and second guess whether I’ve caused more harm, but hopefully, I’ll also know that I gave my best so he would know he was deeply loved.

Jan 15
1

On grief and hearts

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I think it’s pretty clear that I took a break from posting over the last few months or so, Mondays post being the first one in a while. Part of it was there is so much shallow influencer content flooding my social feeds. Highlight reels, objectifying consumerism or cute photos of kids in exchange for more more likes and more followers and free gifts with hastag-ad. It was the season, right? Matching pjs all round?

Truthfully – I really struggle with that kind of privilege. It’s difficult to watch when kids we know are dying (literally, in intensive care and funerals). I needed the social media break, because when you’re faced with literal death, when there is child after child who gains their angel wings I can’t care about someone else’s need for vanity metrics.

Side note: if a grid with a beautiful aesthetic and #sparkJoy hashtags are your jam, that’s cool and I’m happy for you. Different courses for horses and what not. There is no justifications or apologies to anyone required, you do you.

But for me? When faced with frequent death and grief, I want to see authenticity, and real, genuine moments that connect. Things that are meaningful, and matter and bring *real* joy (and not someone exploiting their kids for free kit with shallow, carefree #blessed captions. There’s a difference between reading about a child reach a milestone they’ve been working towards for months and months and months, and a posed kid atop someones shoulders with a #love hashtag).

I recognise that I’m in my own unique little place though. The grief has been relentless and never ending. It could be that we live exposed to the world of paediatric palliative care. That the people who bring us the most comfort are the people in our tribe. The people who live our lives, who understand exactly the kind of emotional hardship we’re in.

They’re also the people with children who are destined to gain their wings early. And as much as all our professionals keep suggesting we ‘step back’, I don’t think they understand. We can’t stop going to therapy, to playgroups, to hospital waiting rooms or to hospice. There is no ‘stepping back’ from our life. Hey ho. We take the love and the support and the connection from people who get it, and the price is that we love their kids, and we’re there, in shared grief when they pass. And they’ll be there for us too, one day. When it’s our turn.

There’s this thing I do now. I ask how people’s hearts are. It’s an invitation to share their emotional state, and it’s an offbeat enough question that you don’t get ‘fine/okay’ platitudes as a response. And despite what our professionals suggest, I do genuinely want to know how people are. I want to know if they’re happy, I want to know if they’re struggling, I want to know how they are. Their day to day truths, if they’re open to sharing.

Partly it’s because I love them, but a lot of is because people have stopped talking to me about the hard things in their lives. Or the positive things. Their kids first day at nursery, or a milestone they’ve hit People don’t feel like they can share because their joys might be insensitive, or complain because they compare their hardship to mine and as a perspective it sometimes trivialises their hardships. But just because my life is hard doesn’t change their hardships, or their difficulty or their joy.

And when people stop sharing their life with me, suddenly everyone I know has lovely picture perfect, shallow lives that are just fine. Everyone is living their most perfect highlight reels. Which is great, but without that camaraderie that happens when people share their reality with you, I’m isolated and alone without any real genuine interaction and connection.

At Mikaere’s playgroup, after we sing the hello song, they encourage him to hit a switch that plays a recorded message. The message that comes out is always “I’m fine” – bright and cheery and so awfully inauthentic. And I hear that, when I ask someone how they are. They always say ‘I’m fine’ with that awful and fake tone. If someone is diverting conversation, that’s okay, I would never challenge it (because respecting boundaries is important!) but I like conversation that forms connection. It doesn’t have to be deep and meaningful, but I’d like it to at least be real.

Part of it also is that if I’m asking about someone else, I’m not talking about my life, or Mikaere’s health difficulties (if we get into that, no matter how matter-of-fact I say it, our day to day is horrific and out of the ordinary. Social etiquette requires the only polite response is to acknowledge it and express sadness, which usually comes with pity and discomfort. At that point I’m comforting them. That’s not a nice social connection, but it’s one I’m playing out over and over and over again).

Talking about their heart, their joys and fears and the small things that they care about, it makes me feel less… alone, less banished to the special needs world.

So. How’s your heart?

Jan 04
0

Introducing: The Chicken Nugget Challenge

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Last year we organised a 12km charity run that was wildly successful*. But, when you say you’re doing a 12km there is a definite barrier to entry. Not everyone wants to run 12km. So, to kick off the New Year, we wanted to introduce something anyone, anywhere could. A bit of silly fun to raise funds for NKH Research.

Introducing: the inaugural NKH Chicken Nugget Challenge!!

(I said it was a bit of silly fun, right?)

Here’s how it works:

1. You sign up to the justgiving team (#linkInBio)

2. You pick your level Supreme (100 nuggets) or Extra (50 nuggets).

3. You get each nugget sponsored, and have your friends and family donate to your just giving page. Supreme- 100 nuggets, sponsored at £1 each nugget. Extra – 50 nuggets, sponsored at £2 each nugget.

4. On the 29.02.20, you source your nuggets, and eat them following the rules.

5. If you can not finish your sponsored nuggets, you must donate an additional £1 per nugget not eaten.

If you’re in London, you can come join us in a SW London location (TBA!) to consume nuggets all together, or if you’re not able to join us – you can complete your challenge at home, or wherever is convenient.

Them rules:

1. Each nugget eaten must be sponsored, each participant must raise minimum of £100.

2. You must eat all your nuggets (as long as common sense dictates its safe to do so)

3. You can use as many sauces as you like

4. You source (and pay for) your own chicken nuggets (100 is £20 from McDonalds, conveniently delivered by Uber Eats, or your can pick some up from the freezer section of your local supermarket to cook at home)

5. You must not leave the table till you finish your nuggets or you yield (there is no time limit). If you yield, you must donate an extra £1 for each nugget not eaten.

6. You can be anywhere in the world, as long as at some point on the 29th of Feb you eat your nuggets, it’s fine!

7. You must take a fifteen second video (on your phone, landscape please) of how you’re feeling every ten nuggets, and upload it to a shared folder (as we will mix a quick promo video for sharing).

8. If you post anything to social media, you use the hashtag #nkhChickenNuggetChallenge

9. You must raise your funds for Joseph’s Goal.

Are you interested? Join us, we’re eating nuggets to raise funds for NKH Research!

More info: teammikaere.com/chicken-nugget-challenge

Sign up: https://www.justgiving.com/teams-creation/join/3f4c52de-50ea-47f5-87f3-75f002f08792

#linkInBio #chickenNuggetChallenge #nkhChickenNuggetChallenge #makingChange #nkhResearch #nonketotichyperglycinemia #ifhnkh #nugget

* By our little family fundraising standards. We were very pleased!

Jan 02
0

Hello 2020

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Another New Year, here we are! We did it! Another year! It’s a tricky one, New Years. I feel like I want to pause, and I’m not really ready to roll forward into 2020.

Truth is – I’m scared about what this year will hold. Will 2020 be the year Mikaere dies? Will it be fraught with hospital admissions, and seizures and pain? Will it be the year we see a slow deterioration? Will it be the year I peer into his crib after the sat’s monitor has gone off, and he’s passed?

I’m in that space, the nervous and anxious anticipation of what I’ve been so brutally primed for. This fear, it holds me tight.  I’m in a holding pattern, really.  Waiting. It doesn’t matter how much I put on a brave face, or how grateful I am or how much I live in the present. One day my son will die and there is literally nothing I can do to stop it (bar fundraising, which feels like crossing my fingers and hoping – but I’m holding on to that hope, gripping it tightly in my hot little hands, scared to let go, hoping for a miracle).

Looking  back at 2019:

Mikaere celebrated his third birthday this year, for which we’re grateful. His head holding has really come along, and he’s as cheeky as ever. He loves the drums and singing and company. Bubbles and banana yoghurt are wins, spaghetti bolognese and tummy time he does not love. He is very very chatty when happy. Mikaere is very wriggly and the king of 2 minute power naps. We also took Mikaere Ice Skating and he stayed a whole week on respite at hospice with his Grandparents.

Therapy still remains a huge part of his day to day, with 11 different regular sessions (Physio, OT, ABM, Yoga, Hydrotherapy/Splash, Vision, SALT, Portage Play Therapy, Osteo) and weekly visits to Small Steps + the Vision Sensory Playgroup. We hope to add hippotherapy in the new year!

He’s had 556 Seizures (and managed a whole 8 days seizure free!!), 228 vomits + has night nurses 3-4 nights a week. We’ve managed a whole year with NO hospital admissions (woohoo!) + only ONE A&E visit! He’s had over 400 therapy/medical appointments across 8 different centres with a combined team of 30 different professionals.

Fundraising wise we’ve had a great year. We raised over £40k for NKH Research in 2019 – bringing our all time total up to over £143k – a phenomenal amount that gives us hope. Thank you to everyone who donated, organised and attended our events and fundraisers. We love you!

It’s huge to know how many people have run marathons (or 12kms!) and cycled, and drank wine or painted art or had a drink or hosted a games night or bake sale or or or (I could go on).

Looking forward to 2020:

If I’m being truly hopeful, what I’d like is for Mikaere to be in a clinical trial for NKH Gene Replacement Therapy (please universe, line up all the dots and fast track it through. Please make it happen). And while that is what my heart is pleading for, a future with my son where he doesn’t suffer, I’m realistic enough to know that instead, I hope for happiness for Mikaere. For a year with less seizures, more development, and more joy. More happy smiles, more cuddles and more belly laughs. That he’ll become more mobile, and ever so slightly more independent.

We’ll see. Please be kind to us, 2020.

Dec 24
0

Merry Christmas!

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As we settle in for Christmas Eve, we want to wish you a safe and calm festive season.

We know that moments of joy are precious and fleeting, and that Christmas isn’t always the jolly affair our highlight reels make them out to be.

For our friends who are on the ward, in ITU, and for those that are facing another milestone holiday with a gap in their hearts, for those that are alone, and for those whose families are on the other side of the world: we’re with you. We send love and strength and grace for managing all that tomorrow brings.
We love you. Merry Christmas x