Jan 12
1

On Introducing the Chair

By | #teammikaere | No Comments

Mikaere has outgrown his tumbleform – it’s a special blue that reclines. It looks like a kids chair, and it’s wonderfully blue. The tumbleform looks fairly innocuous. It’s like a bigger version of a bumbo. Something that wouldn’t look out of place in a home with children. It looks like this:

Technically he still fits in it. The problem is that he’s so wriggly, he throws himself out of it. By that I means he throws his head forward, waves his arms about and his top half topples forward. He doesn’t have the tone to pull his top half back and once gravity has hold his head continues, his shoulders and torso follow over the side of the chair and he’s lying crumpled face down on the floor. (Sidenote: I have only allowed him to fall out of his chair once. I wanted to know if he knew there was an unpleasant consequence whether he would do it again. No such luck. I put him back in the chair and immediately he threw his head forward headed for the floor).

The tumbleform was no longer safe. (Second Sidenote: yes we have straps. They’re not particularly comfortable and squawks like a banshee until the straps are off. It’s a rubbish experience for everyone).

Not having safe and confortable seating is a problem. Kai spends so much time on his back and unless he’s being held or doing physio he’s not upright. Which means unless I’m holding him he’s supine. Booo! So we talked to our OT (which was such a mission because she was ill and away frequently) and eventually, with much emailing and quiet advocating we got a chair.

I was pretty shocked when I saw it.

This chair looks like a giant piece of medical equipment. And sure, it goes up and down and has wheels and a tray and all the fancy medical support you could want. Except that it is intimidating af (despite the bee on the side). And I know, I know we already have the oxygen tanks and stat monitors and suction machines and all the syringes and medication… but you can hide those away in drawers, cupboards or spare rooms.

This giant piece of medial equipment would be living in our lounge. It outted us as a special needs family. It feels like one small step away from a wheelchair. Emotionally it’s a bit of an adjustment. But if I latch on to the idea that it’s good Mikaere, if it’s good for him my fear and grief about being further away for the neurotypical path can get on board with what we’re doing.

So. Kai has a bee chair.

It’s not perfect, and it’s fiddly to set up and his chin is almost always on his chest… but he’s sitting. Supported and safe. The hydraulics mean he can be at standing height, table height or on the floor. The wheels mean he’s easy to move about the flat (and to wheel out of the way when he’s not in it). It’s also been good for dancing in the kitchen.

The best bit is having him at the table with us at mealtimes. That little tidbit has been the nicest. He’s tolerating it better and better. It’s not perfect (trying to figure out a way to keep his chin off his chest without tying his head back is a problem I haven’t yet solved) but it’s better than lying supine many hours of the day.

So. Our first piece of giant obnoxious medical equipment. We have it.

Jan 10
1

On that time we almost got a gastrostomy

By | #teammikaere | No Comments

It had taken months and months of planning – Kai was going to have an MRI and a gastrostomy under one general anaesthetic.  We need the MRI to set a baseline for any treatments we have going forward. We need the gastro to improve Kai’s quality of life and reduce the risk of drowning him every time we feed him. But getting the radiology team and the paediatric surgery team on the same page to do both procedures under the same anesthetic has been a massive wrangle. In the end it was two wonderful anaesthetists who we met in our time in intensive care who came to our rescue.

They agreed – because of the dreaded NKH and how kids with NKH respond to anaesthetic and ventilators we want to reduce the risks. So doing both procedures under a single anaesthetic was a good idea (woohoo!). They got the surgeons to agree it would be best, for Mikaere, to go straight to a button so he wouldn’t need a second anaesthetic down the line. They found a spot in the schedule of one of two surgeons who were willing to skip the PEG and go straight to a button. They convinced the radiology team to let us use the adult MRI machine, because it was directly underneath the paediatric OR’s, and they wouldn’t need to transport Mikaere across the hospital unconscious (something that is quite frowned upon). They convinced both teams to be free on the same morning, and to bump Mikaere’s procedure to first thing to reduce the waiting time and the time Mikaere would be under.

The anaesthetists suggested a loophole to fasting – which we trialled beforehand. Just to see how Mikaere would react to a stomach full of dioralyte with his caustic medications instead of food (because we know he doesn’t tolerate them on an empty stomach, and if he doesn’t have them we run the risk of seizure comas, which is the opposite of what we want to happen when he’s under an anaesthetic). We went into hospital a day before the surgery was scheduled to make sure the fasting went without a hitch. And if it didn’t they had the back up plan of IV meds, ordered in especially for Mikaere at great cost.

It took several months of planning, cajoling and begging to line up all the dots, and we finally finally finally got the go ahead.

And so, we were in hospital. Waiting for our gastrostomy.

Except (there was always going to be an except, right?) – it’s the middle of winter, and kids all across the country are having a tough time breathing. There was not a single intensive care bed free for after the surgery. Because Mikaere is likely to have difficulty coming off the ventilator, he needed a PICU bed. And with no PICU bed, there could be no surgery. And there was not a PICU bed available. (Well… that’s a bit of a lie. There was a PICU bed, but it was needed for a child with a malignant brain tumour. I think it’s absolutely right that child got the bed rather us, with our elective surgery).

To hammer home how slammed intensive care is at the moment, we were told they just sent a child down to South Hampton (an hour and a half away…) to the last intensive care bed they had. The next closest intensive care bed available for kids was Nottingham. NOTTINGHAM. It is unbelievable how slammed the paediatric intensive care is right now (and how horrifically underfunded the NHS is that no centre can afford to open up a unit with more beds).

So. No gastrostomy. Our anaesthetist was so frustrated about the lack of intensive care bed spaces. It’s a real problem, hey. I didn’t even know. For me… I was a bit sad and quite a lot relieved. Sam and I had to have one of *those* conversations before the procedure. We sat in the dark by Mikaere’s hospital bedside and had one of those Quality of Life discussions. There is the real possibility that Mikaere won’t make it off the vent after going under an anaesthetic. One of the decisions we have to make was how long do we allow Mikaere to stay on a ventilator without waking up before we try extubate. It’s a very scary decision to have to make, and sitting in the dark I really didn’t want to make it. I still don’t want to make it, not really. Trying to make a decision of letting go is tough.

Call me silly, but I’m grateful we don’t have to make that decision right this minute. That we’ve got a small reprieve away from risks and quality and the medical everything. We’ll tackle it all when it comes.

Jan 09
1

Happening Next Week! Charity Pub Quiz

By | #teammikaere | No Comments

 

The first week of 2018 is over (so quickly already!) and we’re gearing back up into the world of medical appointments and therapies and all sorts. We’re also having our first charity event of the year – Let’s Get Quizzical. It’s a pub quiz (!) and it’s going to be amazing.

We’ve got two stand up folks (the phenomenal Tony and Tess) who are clever, insanely hilarious and understand that the fun part of the pub quiz is being able to answer at least some of the questions. We’ve got spot prizes and raffles and some fun time hampers. There will be snacks, and wine and beer available for a small donation. It’s going to be a great afternoon, and an easy way to spend a Saturday.

I’m super looking forward to it (though don’t you worry, while I enjoy pub quizzes I’m fairly rubbish at them. Your competition in me is light at best!)

Teams of 8 can book an entire table at the event for £100 which can either be booked online here or you can contact Tony, Tess, Sam or Elly directly. If you can’t get a full team together, book a single ticket for £15 and we can organise you into a team on the day.

It’s going to be grand. All proceeds on the day go to Joseph’s Goal – we’re relentless in funding a cure for NKH (Non-Ketotic Hyperglycinemia). Every small bit helps, and every pound brings us closer to a cure for Mikaere.

Buy Ticket Now

Buy a ticket, and come join us. It’s going to be amazing.

Jan 07
1

Happy New Year!

By | #teammikaere | No Comments

What a year, hey?

We saw 2017 in on the 5th floor of the children’s wing, looking out the window of paediatric intensive care step down unit. The London fireworks were going off along the skyline. We’d been told that hospice and end of life care was Kai’s best option, and I couldn’t possibly have imagined the year ahead. I was so full of fear, that the new year would be one of grief and suffering and goodbyes.

Instead we had a very different year. Still with the fear and suffering and the grief, but there was joy. And love, and happiness. I’ve said it before, but I really wish someone had said that despite that hard times there would still be love and joy and good times.

Thinking back, this year was full of firsts.

The first time Kai smiled (a milestone many nkh kids don’t get to). The first time we heard him laugh. The first time we were home for good. The first seizure cluster, the first a&e visit, the first round of therapies and appointments and the first time I had to advocate name bear loud. Our first NKH conference. The first set of fundraisers, the first time we spoke publicly to strangers. Kai’s first birthday.

There were many firsts. We survived, and I can’t even begin to explain how huge that feels for us. We made it through this year. We made it, all three of us, despite being told at the outset it wasn’t going to happen. Take that doom and gloom paediatric neurology consultants.

We love Kai. It’s ridiculous how much, and 2017 was all about love for him. Taking the little moments of snuggles and chatter. Intentionally stealing moments to love on him in his world instead of rushing through the day (you’d be surprised at the number of appointments where Kai is more an accessory rather than the star. He’s often talked over and about rather than to).

In our yearly review we worked out how many appointments and things we’ve had. It’s a doozy. Kai’s had over 47 hospital appointments, 9 A&E visits, saw 28 different consultants/therapists across 853 appointments across 4 different hospitals, has 4 support nurses who visit weekly, spent 11 days in intensive care, 51 days in hospice, had over 900 seizures and had over 9040 medication doses. We also raised over £49, 572.00 for Joseph’s Goal and NKH Research.

It was this year that we truly learnt what it was like to be special needs parents. It took us a while to find our feet, but we’re pretty confident now. Kai has the support of so many, which means that we can spend less time being his person admin/nurse/advocator and more time just being his parents.

We saw 2017 out at home, with our little baby boy nappy between us on the couch while we celebrated with champagne. It was perfect.

What a year. Here’s to an even better 2018. Happy New Year you guys x

Dec 24
1

Merry Christmas

By | #teammikaere | One Comment

So, it’s been a while. We fell off the wagon a bit since Kai was ill. He was ill so for long, and we’ve been laser focused on him. On making him comfortable, doing everything we can to help him recover all skills he’d lost.

It took *weeks* – weeks of gentle gentle everything. Gentle feeding, gentle stretches, gentle patterning, gentle encouragement. Eventually Kai came back to us, recovered some tone, regained his eating skills, started vocalising again.

And while all this happened I held my breath. I didn’t trust the upswing and was super tense waiting for the swift down to follow. I didn’t want to share how good he was, in case I invoked Murphy and his law (The Fear makes me more superstitious than I ever thought I could be). So haven’t shared, and I’m sorry for that. You all have been our biggest cheerleaders, so I’m sorry for depriving you guys all the good times we’ve had. Here’s a happy Kai:

And then there was the book. Oh my days, the BOOK. I’m overwhelmed with the amazing response we’ve had – we’ve sold over 200 books (!!!!) I don’t have all the languages out yet, but I’m working on it. Some of the translations aren’t perfect so I’m working on fixing those already in print before ploughing on with the other 20 languages waiting for me.

But you guys, it has been so heartwarming to see photos of Eva with your little ones. Honestly, it makes me SO HAPPY. And reading the reviews has been so nice – you guys are the best!

(Sidenote: if you bought a book and could leave a review on Amazon, that would be amazing!)

And then, we had a journalist from our local paper talk about Kai and NKH and Eva (here) which was amazing.

And before we knew it, it’s Christmas Eve. Time, it’s run away with us.

Kai is good right this minute. He’s vocal and wriggly and has all the opinions. We love him so so much.

Thank you, all of you, for love and support and kindness this year. Tomorrow marks the day we were admitted to intensive care, and in the following days we were told that we should say goodbye Kai, and move on to hospice.

What a difference a year makes, hey?

Merry Christmas you guys, we love you x

Dec 15
1

On the Christmas Carol and Triggers

By | #teammikaere | No Comments

I didn’t know the story of The Christmas Carol. When a good friend suggested we go out I jumped at the chance. The last month has been *so hard*  with the isolation. When Kai is poorly and the weather is cold we don’t go out. We cancel all the appointments and hunker in till he’s better. But what that means is that I don’t go out, either. I think it was two weeks before I left the flat, and I was feeling it. The lack of perspective was making me stir-crazy. So yes, I was very very keen to go out. Because we had no firm plans, I googled ‘Christmassy’ and ‘tonight in London’ and what came up was The Christmas Carol at the Old Vic, so off we went.

I didn’t know the story of The Christmas Carol. If I had I wouldn’t have suggested it.  But instead there we were, I was delighted to be out, delighted to have a cup of mulled wine and even more delighted when one or two of the actors offered us mini mince pies. Look at this face – is not one that is delighted through and through?

The show had set up a 360 audience, and as such we were sat on the stage, eye level with the actors, facing the audience. It was amazing. The lighting was beautiful, the orchestra was fab, the three ‘buskers’ were fun (an accordion, cello and violin performing Christmas songs) and the set was quite clever.  Even better, I thought the actors were amazing – the lead, Mr Ebenezer Scrooge was Rhys Ifans, perhaps better known as the crazy flatmate of Hugh Grants in Nottinghill (I much preferred him as Scrooge).

It was all going well and I was fully engrossed in the show… right up until the Ghost of Christmas Present showed Tiny Tim. Tiny Tim had stopped breathing, and his mother walked away to wait anxiously for the Dr at door, while his father pleaded with him to breathe. That’s not what you do, I thought. When Kai doesn’t breathe I do plead and beg him to, but I also reposition him, and blow up his nose, and if he breath holds for long enough, I do CPR.

Unless it’s like that time he turned puce, and then blue. I was so scared, so scared that the inevitable had finally come, my fear was overwhelming. I was completely helpless, and Kai was such an unnatural shade and there wasn’t anything I could do. And just like that, while I watched an actor react in a way only someone who has never experienced it could, I was transported back to intensive care with the very real fear of watching my baby die right before me.

Before I knew it I was sobbing. But silently sobbing, very aware this was probably meant to be a poignant point of the story, but uncontrollably sobbing all the same. I had to stop watching. I covered my eyes with my hands, tears dripping down my face onto my shirt. When the lights came up for the interval my friend seemed a bit shocked to find me in a complete state.

It took me a long time to regain composure, and all the while my friend tried to explain that the story had a happy ending, I couldn’t get past what was clearly a trigger for my grief. I agreed to stay only if there was no more Tiny Tim breathing dramas, deaths or funerals. Needless to say, we left at the interval.

As we left, I offered our chairs to two ladies who had come down to sit with their friend, who was sat next to me. They’d got last minute tickets and were all sitting in different places. “You’re not coming back?” one of them asked, a bit shocked. I understand that:it was beautifully done show. I don’t think they were prepared for emotionally honest me, who, through my tears said: “My son is terminal, and this hits too close to home.”  My friend ushered me out after that.

He took me for fish tacos to make me feel better (which they did). And then we went to Claridge’s, admired their upside-down Christmas trees and was served rich chocolate desserts by young men in white jackets. It was very swish and decadent.  The only blight was it was clear that while dessert at Claridge’s was a treat for us, for some it was their clearly their local while in London. I couldn’t help but feel that the collective wealth in the dining room at that point could easily have paid for a cure for Kai. But hey ho.

It was an odd night. I didn’t realise my grief sat so close to the surface, that I’d be triggered by something like Tiny Tim not breathing. I guess this is one of those things now. Special needs, medically fragile, rare and terminal metabolic disorder parenting.

If you don’t have a terminal child, go see the Christmas Carol at the Old Vic. It really was lovely.

Dec 08
1

Introducing Eva

By | #teammikaere | 2 Comments

After months of PDF proof’s and double checking all the things, worrying over languages and trims and printing quality (most of which I have zero control over…) I’m pleased to announce that Eva The Adventurer is now available. And she’s beautiful.

When publishing a book, there were a few things that were important to us. The first was that any royalties support #teamMikaere and NKH Research. We’re all aligned with what we want – a cure for NKH Research. Specifically, a successful clinical trial for gene therapy in the GLDC gene (and, eventually the AMT gene) currently in progress by Prof. Nick Greene of UCL. We’re so so close, and we know with certainty that the more funds we can send his way the faster the progression. So being as transparent as possible, we get a royalty of around £1 a book. We’re sending that £1 to Joseph’s Goal, who will send it on to the team at UCL. Every book sold is literally helping us fund a cure for NKH. We’re determined.

The second was that our books support diversity. That includes ignoring a few standard gender stereotypes. Our princess is more likely to save herself than wait for her prince. She’s into doing all the things, not just the ones typically reserved for boys.

We’ve also tried to include more diversity within the representations of our characters. So yes, there are some blue-eyed blonde lovelies. And some Asian, redhead, black, coffee coloured beauties too. In our next book, we’re going to try to include those of different religions, too. It’s important that our little ones can see themselves in the literature around them.

The third was that Eva is (at this point) available in a whopping FIVE languages: English, Dutch, French, German and Spanish.  We have Swedish and Serbian in progress and a bucketload of others in the works. It was really important to me that the books were bilingual. We’ve tried to find so many books in English *and* Te Reo, but I think I’ve found a total of one. Womp. Sharing the love of languages and learning is absolutely a priority – so Eva the Adventurer is bilingual. And any future books will also, fingers crossed, be bilingual.

We’ve been really really lucky that so many people have given their time and energy to help us translate. All the translations (and translation checks!) were done by volunteers. So thank you – everyone, genuinely. If you left your name on the translation, you’ll get credit. Your name will be all fancy on the cover along with mine, and you’ll be credited on the amazon listing (which means you’ll be able to search your name on Amazon… it was still novel the first twenty times I searched my name).

So, if you’d like to support NKH please buy a book (they’re all less than £5, unless you’re in the states. In which case Amazon makes you charge stupid amounts for it, I got it as low as I could at $9.95!)

Thank you to everyone who has contributed, who cheered us on and loved us while we weather the ups and downs of NKH. You guys are the best x

Dec 06
1

On the eye test

By | #teammikaere | No Comments

We’ve never been sure exactly what Kai can see. It sounds crazy, really, but when you meet him it becomes pretty clear. He doesn’t meet your gaze. There is no eye contact. And it’s not like he’s aware of you and is actively avoiding your gaze, it’s that we think he can’t see all that well.

Cortical vision blindness, is what it’s called. Where there isn’t anything really wrong with his eyes, but something wrong with his brain. We knew this already – when we were in NICU we knew the toxic levels of glycine were already causing damage to his brain. The MRI was bittersweet. Structurally, all the parts where there. Unfortunately some parts had damage. Womp.

The older he gets the more clear it is. Kai doesn’t focus on things. And when he did start fixing on things, he didn’t follow them with his eyes if they moved. Or, maybe he does? The tricky thing is we know his hearing is bang on. If you make any kind of noise, he’ll turn his head towards you, and his eyes will seek you out. Our ophthalmologist thinks his ears are over compensating for his eyes. It’s crazy. So while we think he’s following with his eyes, he’s actually following with his ears.

Here’s what we do know – Kai can see light. If you flick a light on or off he reacts. So that’s nice. I’m pretty sure he can see movement, too.

But the rest of it? We don’t know really. But we do want to know, as does our neurologist and our ophthalmologist.

So we took Kai out to a fancy eye hospital in East London and had two eye tests done at the electrophysiology department. One was to check if his retina was detecting light (called an Electroretinogram, or ERG) and one was to see if his optic nerve was receiving any signals (called Visual Evoked Potential, or a VEP).

And this is all well and fine. Except that Kai had a seizure right before we walked in to the appointment. Poor little guy. Usually he’d sleep it off as his brain recovered. We’re lucky that the ERP could be done while he was asleep.

Awkwardly, it did mean I held his eyelids open for part of the test.

We had to wake him up for the second part of the test, the VEP. I felt so horrid, but it had taken forever for us to even get this appointment (I hate that I’m still quietly trying to justify it to myself now). So we woke him with a dance party – there were things stuck to his face and head and we kept him awake and flashed lights in his eyes. I can only imagine how terrible that was if all you want to do is sleep.

Le sigh. I was glad when we were done. It took a while for the results to come back, but long story short there is nothing wrong with his retinas. The VEP looks promising, but it’s hard to tell because the post-ictal stage interfered with how Kai’s brain was working and the readings they received.

So in a few months we’ll have to go back and do it again. Fingers crossed less seizures this time.

With all the electrodes...

Dec 05
1

On feeding Kai purée when he’s nil by mouth

By | #teammikaere | No Comments

Our speech and language therapist (SALT) came by last week. I like her, she’s lovely. It’s her job to assess Kai’s suck and swallow, ensuring that it’s safe for him to feed. That his swallow is good and his suck solid and that we’re doing everything we can to encourage oral feeding in a manner that’s safe.

She decided that Kai should be nil by mouth. That we should put nothing in his mouth, that his suck was nonexistent (which we knew) and his swallow was unsafe. Kai would hold anything in his mouth in his cheeks. Or not even his cheeks, he’d drool it out if positioned correctly.

100% tube fed.

That was hard to hear. Also, completely impractical for us. Since he’s been ill, Kai has been maybe 98% tube fed. Part of having the ng tube is that we check each and every time we use it to ensure it’s in his stomach and not in his lungs. Every time. Because every cough or vomit could move the tube up his throat, and it could move from his belly to his lungs. If we put something down the tube and it was in his lungs, we could drown him. Nothing like an element of extreme danger when feeding your own child, hey?

But, to check Kai has to have something in his belly to aspirate – for us to draw up the tube to know it’s in the right place. If we don’t get an aspirate, you can’t just put things down the tube – there’s that risk of drowning.

So we do the aspirate dance. We reposition him, lie him on his left side, sit him up, push a small amount of air down the tube. We pull the tube out slightly and push it back down. If we still don’t get an aspirate (which is most of the time) what we would give him something orally till there was enough in his stomach to get an aspirate.

If Kai is nil by mouth, we’d need to pull the tube out and pass a new one. If we still didn’t get an aspirate (which is likely, because there’s probably nothing wrong with the tube), our nurse’s advice is to go into the a&e and get an X-ray.

Uhm.

No. Just no. I am not taking my kid into the a&e and exposing him to all the risks of the other sick children to get an X-ray and mistime all his meds 3-4 times a day because we can’t get an aspirate. It was the most impractical piece of advice I’d ever heard.

What we need is a gastrostomy, because with a gastro you know it’s in the stomach. It’s surgically placed in the stomach and has zero chance of moving with a cough or a vomit.

But we’re still waiting for that.

So, we very very carefully weigh the risks.

It’s the risk of aspirating something into Kai’s lungs by giving him something oral vs the risk of Kai catching something while we wait in the a&e waiting room, and the risk of increased seizures while his medication schedule is all out of whack while we wait on the hospital time.

There are other considerations: the risk of the tube moving into Kai’s lungs is not zero, but it is small. What’s more, if it’s blocking his airway we should be able to tell, in the same way we can tell when he’s working harder to breathe with the increased secretions of a cold. It’s not a 100% reliable method (and we don’t rely on it) but it’s something to think on.

The second is that Kai is recovering from a horrific respiratory virus. His body is exhausted and everything is out of whack. He’s lost some skills (womp) but we’re hoping it’s a transient loss – that he’ll regain those skills. What’s more, Kai had a seizure before our SALT arrived. She saw Kai for maybe half an hour, at a time when he was particularly low. Her view of his Kai’s ability to suck and swallow is based on that snapshot.

However, my perspective is based on hours and hours with Kai. Sure enough, later in the day when Kai was positively perky, he was showing much more interest in swallowing and sucking. The next day was even better, with him managing a dummy with enthusiasm.

So, I took a calculated risk and fed Kai some purée. Which of course he nommed down like a champ. It wasn’t a lot of purée, maybe an ice cube amount, and it wasn’t pre-illness standards, there was a second swallow to clear what was in his mouth, but he took just enough to enjoy himself and to get an aspirate.

This is one of those moments where I hear what our medical professionals are telling us, and I absolutely consider it, but then I look at Kai and figure out what is really best for him.

If Kai is awake and aware and doing just fine, and managing his secretions, sure, let’s try purée or a bottle. Just a small amount, because I don’t fancy tiring him out eating. But enough to get an aspirate and for him to enjoy the sensation of food in his mouth and for him to use the muscles required for sucking and swallowing.

If Kai was drowsy, or had a seizure earlier in the day or was maybe a bit less with it, I’d never try feed him purée. I might try a tiny amount cooled boiled water if I thought he was awake and aware enough to swallow it (if he aspirated, cooled boiled water is going to be less harmful in his lungs than say a mouthful of chickpea and sun-dried tomato purèe).

If I couldn’t wake him, and he wasn’t managing his secretions I wouldn’t even try the water. I’d take him into a&e for that X-ray.

I’m not an idiot, despite how our medical team dole out advice and insist they know best. My problem is they see Kai for a short amount of time, a tiny snapshot, and make huge sweeping decisions that I’m expected to follow without hesitation or argument. I’m meant to trust our team implicitly.

But they’re just people. Who are sometimes wrong, who don’t look at the big picture and who don’t have the perspective I do. They’re also bound by NHS policy, which is designed for the cost saving average, rather than the wellbeing of Kai specifically.

Becoming a special needs parent is about becoming an expert in your child, and in advocating for Kai, I perhaps stand up to our team more than other parents do. Or at least I get that impression from the manner in which I’m treated when I disagree.

So. I’m feeding my son purée when he’s been declared nil by mouth.

I don’t enjoy being in this position, but hey ho. Bring on that gastrostomy, hey?

Nov 28
0

On the end is in sight, but the cost has been painful

By | #teammikaere | No Comments

Kai’s fever finally broke over the weekend. Hallelujah! He’s still not 100%, but we’re out of the worst of it. With the fever gone Kai’s been able to hold his own 02 levels, his heart rate is down and his respiratory rate has returned to normal. Which means he’s not working as hard to breathe – thank goodness for that! He still has the crazy chest crackles, and the mucous vomits are still a thing, but we’re on the tail end.

While I’m grateful the end of this stupid virus is in sight, it’s hard to see the decline. Kai has backslid developmentally. The seizures and illness has really knocked his body for six and he’s paying the price.

It’s heartbreaking to see. Is it too brutal to list all the changes?

  1. Kai has lost his suck – which means he’s not even bottle fed right now. From taking purées orally to formula only through the tube… that’s hard to see. I thought we’d left the pump behind, but we haven’t.
  2. He’s no longer chatty, there are no more little squawks or happy giggles. Kai vocalises only when he’s upset, which is heartbreaking. I miss his happy little chirps.
  3. He’s lost his tone. No big motor movements to hit the bells, Kai’s stopped exploring with his arms, he’s stopped kicking.  No more head holding. No more trunk support. Just a super floppy little baby, back to newborn like tone.
  4. The seizures. Oh my days the seizures. They’re longer, more frequent and more violent. More tears, more pain.
  5. The dystonia movements. They’re new and not good, I don’t think. Dystonia is a neurological movement disorder – where Kai’s hands and arms and wrists contract over and over again, pulling his arms and hands into an abnormal fixed position. It’s horrific to watch. It’s something to do with his nervous system over reacting, all the time. Very startle-y, very twitchy.

All of this came from “just” a cold. Something you might get sniffles for, and brush off. No big deal. Except it’s a huge big deal for us. My kid went from eating to not eating and being 100% tube fed. He went from being aware and curious about the world to a sad little shell of himself. This is what happens when you touch a medically fragile child without washing your hands.  Always, always wash your hands. Always.

There is this other thing I’m struggling with… The dystonia pulls Kai’s hands into odd positions. For the first time (to my eyes), Kai looks truly disabled. Before the dystonia, if Kai was hanging out in his buggy, tube aside you wouldn’t know he was ill. He’s not a wheelchair, he’s not drooling or teeth grinding and his eyes don’t look out at odd directions. He was just a beautiful little boy.  Strangers would stop us at street lights or in supermarkets to comment about what a handful he must be, or how well behaved he is. And I think I found comfort in it, that while I know he had NKH and intellectually I was onboard, my child didn’t look disabled.

Kai looks disabled now. And I know it means nothing, that that nothing has changed in Kai’s world and I still love him like nothing else, dealing with other peoples view of him has been difficult. The pause as his therapists take in the changes,  the lady in the supermarket who wanted to smile at a cute baby, but after seeing Kai looked away and avoided my gaze, the little girl who asked her mother quite clearly ‘Whats wrong with that baby?’ and her mother telling her not to ask questions.

I feel like I’m grieving Kai all over again.

And I know, I know the skills might come back. I know. I know that once he’s fully back up to full health it might all be different, and the dystonia might go away and he might recover his suck and we can back to trying foods orally.

But it’s hard to watch now and not feel guilty. And wonder whether if I’d been more strict about being in the bubble, if we hadn’t gone to the children’s groups or the playground, or if I’d put his buggy raincover on while we were in the hospital waiting room… whether he might not have caught anything. And might be moving forward, rather than backsliding.

Honestly, I’m trying to be kind to myself but the guilt is overwhelming. Cold and flu season, hey? It’s horrid. Please can it just be April already.  Let’s skip winter.