Tag

#teamMikaere

Apr 27
1

Update on the button + vomit

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Before Mikaere had his surgery, I spoke to anyone and everyone whose child has had a gastrostomy. They all said the same thing – it was game changing for their child. And while there was a lot of positives, I was unprepared for the epic amounts of vomit.

Before the gastro Mikaere never vomited. If he did, it was very very rarely and only ever when he was ill. Now? Now I have vomit in my hair most days. I have buckets of things soaking in my bathtub to get out the vomit stains. My carpet smells of vomit. My washing machine is on an endless cycle of things that are covered in vomit. My clothes. Mikaere’s clothes. Sheets, muslins, blankets, couch covers. Today Mikaere even managed to vomit over the recycling bag, getting (and I kid you not because I had to sort it) every single piece of recycling we had covered in vomit.

Vomit rules our lives right now. Please hold off on the advice giving – we’ve done everything. Reduced the feeds, slowed the feeds, spread them out over the day. It doesn’t matter whether it’s blended food or formula or dieralyte or even just plain water. Gaviscon can suck it. He’s already on omprezole. He’s always upright when we feed him, either reclined or in supported seating. It’s not directly after a feed, it’s about 2-3 hours after. I’m not going to consider a fundo (like I said – I’m not looking for all the advice here. I’m just telling you where we are right now. Yes, we’ve talked to the surgeon, our paediatrician, our gp and all our nurses know).

We think it’s because of the gastrostomy. With the way his stomach has been hitched to the abdominal wall, which means food goes in, and is forced (because of the way the stomach is slanted) straight into the top of his intestines. This has changed the way he feels when he has food in his belly and because of how his stomach is pulled (unnaturally up towards his abdomen) it’s put pressure on the lower esophageal sphincter, which is that the nice bit at the bottom of your esophagus that keeps your food in.

There is research that says a lesser curvature gastrostomy reduces the incidence of postoperative gastroesophical reflux (aka, vomiting because of the gastro – source) so for everyone due to get a gastro – you’ve been warned. Asked for a hitch with a low curvature and make your surgeon agree.

In the meantime, I’m at a loss. I don’t know if this is going to be a forever thing (I desperately hope it’s not) or whether as his body acclimatises to the new stomach position and the stress on his oesophagus he’ll be able to hold food down.

Blah is how I feel about this. Blah and heartbroken for Kai who hates vomiting. With a passion and cries his little heart out when it happens. It’s heartbreaking.

Stupid vomit. We’re over it.

Apr 25
1

On a fundraising update

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We as a little family have a fundraising target, aiming to raise £100k for NKH Research.

Thanks to you guys we’re currently at a whopping £53k (and counting!) – and that’s the truth, the bit that it’s thanks to you guys. Most of our fundraising has happened through other people, people who have held bbqs or cake morning’s or run a marathon. Small, easy things that have added up.

So I wanted to update you really quick on what’s going on:

1. The Eva Books!

I will forever love you guys for helping me translate the Eva books and even more for buying them! I’m still working my way through the translations but there is a whopping 15 Eva books available on Amazon. Eva is available in 15 different languages. Well, I say that, but she’s actually bilingual (all the translations have the English *and* the translation, for bilingual families). Like this:

 

 

Additionally, I was able to send off the first royalty donation this month, a whopping £430 went to Joseph’s Goal. Considering each book makes just over a £1 in royalty fees, I’m pretty happy with that.

If you haven’t got your copy yet, you can buy it from booksforwednesdays.com

PS – THANK YOU to everyone who has sent in a picture of their kid with an Eva book – you guys are the best!

2. #IFHNKH Tee’s

Did you see my previous post about the amazing IFHNKH tee’s?? I won’t rehash it, but I’m pleased to say we’ve sold a BUNCH of them – if I had shelves stocked I’d say they’re flying off (buuut thanks to the wonders of dropshipping, I thankfully don’t need to store shirts. They’re printed and shipped on demand, right after your purchase goes through. Best thing ever, hey?)

I just wanted to say thanks to everyone who had bought one. Each of these tee’s has a small margin on them and you know that small margin is going straight to NKH Research. Oh yeah!

If you want one, they’re available right in the teammikaere.com/shop  If you’ve bought one – send me a selfie! I want to see you in your #ifhnkh shirts! x

PS – I’m still trying to figure out a decent dropshipping for the US. Will keep you posted!

3. BV Love for the phenomenal Adam

Adam, (who, prepare yourself for a throwback: having just the company, joined Sam on the last day of his ridiculous 72 mile walk along the Thames Path AND was on the winning Charity Quiz team) is riding from London to Paris. On a bicycle. 243 miles (did any else just cringe?)

Honestly, we’re so grateful that he’s doing this, so grateful that he’s raising funds for Joseph’s Goal and #teamMikaere, we’re genuinely blown away by the support. What a stand up guy, hey?

If you’re on of the #OTOD BV family and you’d like to #bgenerous – Please donate to Adams ridiculously amazing event at justgiving.com/fundraising/lonparmikaere

 

4. Kiwi Cross Crew Love for the phenomenal Margot

Margot I met at a ridiculous French Party when I first moved to London. She’s one of the most genuine, most lovely people I know and last weekend she ran her SECOND marathon for #teamMikaere (having just run the Berlin Marathon for us last September) – this time in London. She’s set a goal to raise £1k for Josephs Goal and #teamMikaere – and SMASHED IT.

At the risk of repeating myself, we’re so grateful for the love and support shown by Margot. Fun fact, she was the first person to ever babysit Mikaere. We were so pleased that she was running for #teamMikaere, we printed a London Marathon shirt, just for her.

If you fancy highfiving her, you can donate to her campaign: justgiving.com/fundraising/margot-knight

5. Fancy helping us fundraising?

We can’t raise these funds without you. We’ve asked everyone for cash over and over and our social circles are saturated (sorry about that). But what we can ask is if you could help us – could you organise a bag pack at your local supermarket? Could you put us down as your local cause at your nearest Waitrose? Could you do a cake morning at work, 50p per slice? Or a raffle? Or a BBQ one weekend, or anything. Whatever floats your boat.

Because here’s the thing – for every £5 we raise that’s £5 towards a cure for Mikaere. There is so little funding… it costs well over £300k to run a research lab for a year, and it’s managed between grants and fundraising by people like us.

We have hope in a future only because we know the only thing between us and a cure is money. So set the bar low, if you could help us raise £20, £50, £100 – it adds up and it makes a difference. Please help us give Mikaere a future. We can’t do it without you guys.

Apr 23
1

On the Boston Conference

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I don’t know where to begin.  I left Sam and Mikaere early on a Wednesday morning and caught a taxi the airpot. I left in a rush, which made the leaving part a twinge easier (because leaving your sweet, medically fragile child is never going to be easy, even in the best of times).

Then, before I knew it, I was in a cute little church hall with facebook come to life. I can’t even begin to express how amazing it’s been to meet the people I’ve been talking to online for the past year. To meet Tarah and Eric, Drake’s Parents. Maddison and Dalton, Kanes Parents. To meet little baby Willow, Jade and Larry, Evelyn (Bella’s Mom) and Trine with Karine and Robin with the most beautifully sweet Saige. To finally finally meet Kristin, the mighty force behind the NKH Crusaders and her son Thomas. To be reunited with Emma and Paul and Joe, the famous face behind Joseph’s Goal.

I get these will just be a long list of names for you. But I’ve been reading these names daily for the last 17 months. I’ve been sending messages and liking posts and commenting on photos and asking advice. I’ve been sharing their grief and cheering their joys and until this week, I’ve only been privy to their lives through a screen. Really. In my head I was still associating people with their full names and avatars, like you see on Facebook.

There was a lot of love at this conference, a lot of kindness and a lot of people who GET it. Who live a similar life a million miles from where we do.  To be in the same room? To cuddle sweet Kane and to hold Willow and to sit with Joe? You guys. It was like my heart exploded – these kids were just like Mikaere. They were JUST LIKE HIM – I was in a room with my tribe. I can’t even begin to explain what an experience that was.

To leave my little guy with Sam and fly across an ocean was tough, but what I didn’t understand was that I was going to be with what essentially is my NKH family. It sounds mushy af but it was wonderful. To be with people who understood seizures and blowing up noses and were happy to talk out anti-epileptics and b-vitamins and how there has to be more going on in the folate system than we know about. It was like being thirsty for company and arriving at an oasis. And I drank my fill, believe you me. So many beautiful people, so many beautiful NKH babies. It was AMAZING.

Dr Van Hove and Dr Halder were also there  to share where they are at with their research. I was very interested to hear the directions Dr Van Hove was exploring. Dr Halder was less straight forward with her work – there was a lot of holes in her talk and she’s hasn’t made as much progress as either Dr Nick Greene or Dr Van Hove, but it sounds like she has a lot of support and financial backing which is positive.

Essentially, Van Hove is looking at Chaperone Therapy, which is to say he’s looking for an existing FDA approved drug that will be able to help stabilise the proteins our kids make, allowing them to part-process glycine. This may even allow them to take a step down on the severity scale, drastically improving quality of life for our children. He’s also looking at the Serine hydroxymethyltranferase system, which is a system that keeps serine and glycine in equilibrium.

It was a very exciting conference, I feel like there was a lot of moving parts that came together in a positive way, particularly in terms of the charities and the researchers, and how we as #teamMikaere fit in, and how we can support the bigger players.

Unfortunately, the main theme that shone through was funding, and the lack of it. It costs approximately £200k a year to run a small lab at bare bones. What’s more, between the three researchers funds from the usual family charities are now diluted. Its difficult, because I know NKH families are already stretched, and have already reached out to their social circles for donations.

Funding, it’s always going to be the bottleneck between us and a cure. It just kept coming up again and again, how much funding is required and how little there is – some of our researchers are seriously struggling to stay afloat, which really was difficult to hear.

When the conference drew to a close I was sad to say goodbye. We’d only been together for three days but a lot happened. There was a lot going on and I’m grateful we got the time we did. What a whirlwind trip.

I know there will a UK Conference later this year and I am beside myself excited to be at that one too. It’s important, hey? This time with people who get it. I’m glad I went. Being away from Mikaere and Sam was rubbish, but I’m still glad I went.

From Left to Right: Kari and Maddison (Kane’s Grandma/Mum), Me, Jade (Willow’s Mum), Emma (From Joseph’s Goal, Joe’s Mum) and Evelyn (Bella’s Mum)

 

Dalton (Kane’s Dad) with Kane and Joe, and cuddles with Kane (honestly, the sweetest little guy!)

Me, Tarah (From the Drake Rayden Foundation – Drake’s Mum) and Emma (From Joseph’s Goal, Joe’s Mum)

 

Dr Van Hove and Dr Halder presenting at the conference.

Apr 16
1

On the Art Exhibition

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Mikaere’s Grandma is in an Art Group. Earlier in the year they ran an exhibition, where a percentage of sales would go towards NKH Research, and they would collect donations, run a tombola and have a coffee/cake morning.

Well. What an AMAZING event!

We arrived late in the day. It was one of those snowy beast from the east days, and the weather was horrific. We half expected the morning to be moderately busy and the Hall to be empty by the time we finally got there. Except when we walked in and with an hour left to go, the hall was PACKED. Loads of people were still there, drinking coffee, viewing the art. It was phenomenal. We even managed to purchase a piece before everything closed down, and as always we enjoyed the visits and talks. We can’t help but feel the village community is behind us.

We found out after that the event raised over a whopping £1600. We’re so grateful that entire groups of people come together to support us. All of the money raised at the event goes directly to Joseph’s Goal, which in turn goes towards NKH Research.

So thank you to everyone who came. Thank you to Toddington Methodist for donating the space, the Toddington and Westoning Art Group for running the exhibition, for donating a portion of your sales, for selling cards and coffee and donating cakes, for running the Tombola and for helping set up and take down. Thank you to everyone who came and donated, who bought a painting or ate some cake.

Thank you everyone for the love and support. We’re overwhelming grateful, really we are. It hits home when we realise we’re not alone in this fight. That there are others that care about Mikaere, and about us, enough to help run events like this. We feel like the only thing between us and a future with our baby is money (which is infuriating, right?) so when a group of people – some who we hadn’t met – pull together an Art Exhibition like this – overwhelmed with gratitude doesn’t even cover it. We feel loved and so fortunate that there are so many people on #teamMikaere.

So thank you to the Toddington and Westoning Art Group – you guys are the best.

PS – if you’d like to fundraise with us – let us know. It doesn’t have to be a big event like an art exhibition, but could be something simple like a fun run, or a bbq or picnic. If you can throw a dinner party, you can throw a fundraiser. Help us raise money for charity?

Mar 30
1

On the ward

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I’ve never been so grateful to be on the ward. Back to shared rooms and small cubby’s and nurses shared between three beds.

Mikaere tolerated his meds on a diarolyte solution. He tolerated his formula. He did NOT tolerate food. Womp. There was vomit. So much vomit. And with every vomit we tack a day on to how long we’re in here.

It’s not so bad though. We’ve got our own cubicle at the minute, having moved out of the shared room. We’ll revert back to formula at a rate he can manage (slow and steady). And our days are slow and easy as Mikaere recovers.

We take walks around the ward, and set up a rotation of toys from the play specialist. We read books and sing songs and take naps. (Best tip I ever got was asking for an adult sized bed instead of a crib. Mikaere doesn’t roll, let alone climb over everything so is in no danger of rolling off with the sides up. It means we’ve got more space to manoeuvre him, space for us to sit and a nice spot for a joint nap).

The other bonus is that we’re still doing the meds ourselves (it’s a bit of an ongoing thing, Kai’s meds are complex, and the nurses and the chart are always wrong, so we do it to make sure it’s the right med at the right dose at the right time).

We’ve also continued our at home nurse help, which has been amazing. Because the hospital nurses are there for emergencies, we haven’t had to stay the whole time – knowing that there is someone Kai knows and we trust has been amazing. It meant I was able to come home to sleep once or twice (a proper 6 hour sleep in a bed after a shower is pure bliss).

We’re in no hurry. We’d obviously like to be home, but this doesn’t feel like our other hospital visits. Mikaere is not sick. He’s not fighting for health. He’s not struggling.

There is the the occasional vomit while his stomach recovers, so when the surgeons suggest another day I’m not heartbroken. Kai is going to be okay, and once he goes a full day without vomiting we’ll be discharged.

Update: later that very day we went home. Five days end to end we were here, from fasting to discharge. I’d expected to be here at least a week or two, five days feels swift. Hallelujah we’re home!!

Mar 28
1

On coming out of surgery

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When the nurse came into the parent room and said Mikaere was 30 minutes away I let out the tiniest breath. When she came in 20 minutes later and said not only was Mikaere now in PICU, but screaming I wanted to cry. Screaming meant he was awake. Screaming meant he wasn’t on a ventilator. Screaming meant all the fear and worst case scenarios were not us right this minute.

I barrelled across the hall, washed my hands with lightening speed and rushed to comfort my baby. He’s cheeks were bare – no ng tube. He was covered in wires, and as he thrashed about he caught his hands in them.  His little fingers scrambling in wires to measure his head rate, his respiratory rate, his o2. Red, green, yellow wires. The white chunky ones for blood pressure, the cuff around his forearm. The probe for secondary stats. Tubes going to his cannulas. A nasal o2 tube. And there, bang smack in the middle of his belly was his new button, stitched into his lily white skin.

So many tubes. So many wires.

But the relief was overwhelming. He’s fine. He’s alive and here and very opinionated in his objections of what just happened.

Despite the wires I scooped him up for a cuddle – that’s the bonus of having been in PICU before. You know which tubes are precious and which aren’t and which to watch for when you want a cuddle. I wasn’t intimidated by the wires. Not even close.

And sure enough, once he had a dummy and was safely snuggled in my arms, he settled a bit and stopped screaming.

My beautiful baby. It felt like we’d gambled for an improvement of his quality of life and we’d come through. The relief really was overwhelming and I felt like I was constantly holding back tears. He was fine. He was here. No coma. No vent. Just baby outrage and cuddles.

As he calmed and we settled into the afternoon, everyone relaxed. We stepped back in the world of intensive care. We said hi to the nurses we knew, who knew us. They all marvelled over how big Mikaere had gotten. We knew the system, we knew the room. It was all eerily familiar.

Once Mikaere was on pain relief and happy bundled up in my arms, the weight of the world dropped from my shoulders and we relaxed.

It felt weird to be in intensive care relaxed. The last time we were here we were being discharged into hospice on end of life care. Mikaere got baptised in that bay over there, a just in case emergency baptism when we weren’t sure whether he was even going to make to hospice. That bay was where he met his Grandad Gedge for the first time. We spent Boxing Day last year over there, and hours upon hours in the bay we were currently in. This room was full of grief and memories. Our fears were all here. It felt weird to be there and not feel that. Mikaere was *well*, the most vulnerable moment had past and we were in PICU just in case.

I could feel the grief of other families though. I heard a ventilator beep and recognised it as an o2 drop. Maybe a blockage in the tube, maybe some suction required. I heard someone else crying over their baby. I heard a pump beep indicating that the syringe needed to be changed over, a mum try comfort her son, a support worker talking in hushed tones and a musical light show as a distraction attempt.

I heard all these things and remembered and was infinitely grateful that none of those things were Mikaere right now. We’d lived that before and instead my son had only observational wires and a dextrose/pain relief solution through a single cannula. That and his brand spanking new gastro button. All positive things. None of these things were dire, intensive care things.

Thank FUCK.

Even better, one of the consultants stopped by for a chat and some baby love. She mentioned that if they needed the bed we’d be the first ones to be evicted from PICU up to the ward. I loved her for sharing that. That if anything happened, Mikaere was the healthiest in the room. He’s never been the healthiest in PICU before.

And so we wait. We see how Mikaere goes overnight. How he tolerates formula. How he manages his pain. And tomorrow, fingers crossed, we’ll be discharged from PICU and make it up to the ward.

Mar 26
2

On between the MRI and the Gastro

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We saw him briefly. So briefly. We knew they were coming because we heard them readying him for transport. I was already standing to the side when the doors burst open. Our Tuesday carer, Wai, beside me.

He looked so little. He had a vent (horrid and wonderful life saving things that they are) and his eyes were taped shut. Two cannulas were in his feet.  Irritating, because we’d put numbing cream on his hands and inner elbows to help with the pain in going in.  His hands and arms were covered in red puncture marks where they’d tried and failed to get a cannula in. (Turns out the numbing cream is also a vascular constrictor.. fail).

He looked so little. So vulnerable.

Mikaere was being moved from the MRI clinic (an adult clinic which they’d commandeered for him because it was closer to the paediatric OR) up to theatre.

We rode up the elevator together and I gently held his tiny little hand. More for my comfort than his.

We stopped in the corridor near the OR – no parents past this point. Only patients and doctors. Saying goodbye a second time was equally rubbish. Still, I was grateful I got a glimpse of Mikaere. That so far he was doing okay.

We went down the hall to the Paedatric Intensive Care. We knew he’d be going there after and were told we could leave our stuff in the parent room.

It’s a tricky place, fraught with familiarity and grief from when we were there last year. I got flashbacks of Christmas and New Years. The microwave dinners we’d had on our knees, wolfing down food so we could go back into PICU. The tears, the quick power naps, the unbearable waiting that happened when we had visitors and it wasn’t my turn to be with Kai (it’s only two visitors to a bed, so turn taking is a thing). Mostly I remembered the fear. Of not knowing what was going to happen, of Mikaere sinking into a worse and worse hole. Of everything seeming so overwhelming and horrid.

I’m glad we weren’t under the same circumstances this time. Oh waiting. I willed time to pass quickly.

Mar 23
1

On Getting Underway

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I was left standing the waiting room with a handful of my babies clothes and his dummy, my heart in my throat. Walking away was rubbish, watching four strangers crowd around my baby, looking so little on the giant adult sized bed, blue gloved hands busy attaching probes and doing medical things as Mikaere lay there unconscious as we were ushered out the door. Leaving was hard. Trusting them to do their jobs and their jobs well when my little guy was asleep on the table… difficult.

I was unprepared for the leaving part. We’d been waiting so long for this all to finally go ahead, that I was more focused on tee-ing everything up, half believing it would, again, be postponed that when it was go time, I was unprepared. But there you have it, after months and months of waiting my son was right this minute being put under and I was being gently  pulled out of the cubicle.

I wanted to cry when we left him and I almost caused a motherly fuss – my fear was overwhelming. (I don’t know exactly what I’d be fussing over, the right to stay? It doesn’t make any sense, because I know we’d never be able to stay. Emotions – not always logical).

There was a girl on the ward last night, while Mikaere fasted. She must be 18, young enough to be on the paediatric ward but old enough have a 1 year old of her own. She’s dislocated her jaw and has all the fear about the pain of having it reset in place. I overheard a lot of her fears and anger and confusion. Hours of it. She desperately wants to see her baby but can’t get over the fear of the pain that comes with having her jaw reset. And until it is, she can’t leave the hospital.

I’m not getting down on her, because I was there when they tried the first time and I heard how that went. But at the same time, I think the moral of the story is there is a choice. A short, sharp spike of pain and its done – no more pain, or a long drawn out pain while you wait and sit with your fears and fuss.

The main thing for me was how her fuss made things difficult for everyone else. For her family, for the nurses who were trying their very best to help her with her pain, the consultant who was on hand if she wanted to try. Us, and everyone else in the room who silently listened to her process all the things.

And as I sit in the waiting room for the first of this long drawn out waiting process of my own, I feel like it’s best to just get on with it. Waiting is rubbish and my fear of it all going twisty and wrong is high, but there is no point making a fuss. I don’t want to be like that girl on the ward going on and on, when I have the power to emotionally move myself forward.  So instead I sit quietly and write you guys a blog post.

Mikaere’s under the general anaesthetic and is having an MRI. Up next, gastrostomy. I can’t sit still and I keep repeating that Mikaere will be fine. He will be. And I wait for the MRI doors to open.

Mar 21
0

An update on the superhero suit

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We got the suit! It’s only been a week so far and we’re easing into it but oh my days, what a difference. I know that it makes sense, with a supportive suit he should be able to support himself more, and he DOES. Sitting is better, it’s like his whole trunk is supported so he doesn’t have to work as hard, which means he can work on holding his head or swinging his arm or whatever it is he’s trying to do.

The only downside is that it is quite warm – making Kai warmer than usual. Difficult, with the helmet, which also holds all the heat in. We’re taking temperatures like nobodies business to make sure he’s acclimatising okay (and he is, what a champ) but it’s just something we’re aware of when we dress him in the morning. Thinking about layers and all the things. Checking his body for red marks to make sure the compression suit isn’t compressing him in a way that causes pain, or leaves red marks.

It’s weird to think about all these extra things, and what a difference it makes. It also makes me feel like we’re worlds away from the neurotypical path. Hey ho, onwards we go. I’m glad we’ve found something that helps Mikaere, that makes his life a little bit easier.

Hurrah for Superhero suits, hey?

Mar 16
0

On not having a paediatrician because the NHS is underfunded

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Everyone knows Mikaere is medically fragile. I’ve talked before about how large our medical team is and how we have an appointment of some kind every day of the week. Our life is a series of appointments and therapy and special needs groups. We go to all these things because it helps Mikaere, it keeps him safe, minimises risks, teaches him skills and relaxes him and puts all sorts of services in place for when things go belly up and he needs them. It’s a full time job, organising and ferrying him about, being present, understanding the goals and raising concerns and following up.

Of all these services, our paediatrician is the most utalised. He’s the person who knows Kai the best, who is our first port of call. He orders our meds and the bloods and all the checks. He’s our go-to person when anything is wrong, if the meds are out or there are more seizures or we need something. He orders all the referrals, the X-rays to check for hip formation and scoliosis. The orthotic referral for the suit, the physio referrals, the gastro surgery referrals. He pulls checks on all the difference services, speech and language, physio, OT, nutrition. He’s the person we work with, the person we make a plan with and who helps us works the system to make it happen.

We’re lucky that our paediatrician is covered on the NHS, as are most of the services Mikaere uses. For those not in the UK, the NHS stands for the National Health Service. It means that the basics of our healthcare system are free at the point of care. Meaning, we’re lucky that for the bulk of Mikaere’s care, it’s covered by the tax we pay.

Here’s the thing though. The NHS is chronically underfunded. It may not look like it from the outside, but it is.

Mikaere’s paediatrician was a locum, which means he was temporary while they found a permanent person to take that role. Which is fine, we knew this and accepted it. However, a month or two before end of the financial year the paediatric locums were let go as a cost saving measure. And – get this – there was a gap in care. There was a gap where there was NO ONE to pick up the case load, where Mikaere DID NOT have a paediatrician – our first port of call, someone to prescribe his many meds or chase anything (like that gastro we’re waiting for). We didn’t know where to go for all the things Mikaere needed.

My small, medically fragile and vulnerable son did not have a paediatrician because the hospital trust was told it needed to save some money.

As you can imagine, I raised an absolute stink about it. I emailed the Medical Director, Andrew Rhodes. I also emailed the Head of Child Services, James Gavin. I made an official complaint to the hospital, wherein they couldn’t tell me why officially why there was a gap in care. I emailed my MP, Justine Greening. I also emailed Jeremy Hunt (https://www.jeremyhunt.org/contact – and if you can, I’d ask that you email him too, and tell him chronically underfunding the NHS is having a crippling affect on the most vulnerable of our population). I’ve complained to CQC and I’m in the process of a complaint with our local ombudsman.

And nothing happened, nothing changed. I got a few platitudes and apologies but not much more. And that’s because the problem is bigger than the trust that runs our local hospital and provides basic care for Kai.

Underfunding at the NHS is happening and it’s affecting my family in real and tangible ways – for the worst.

And I know. I know we’re lucky to live in a country that covers care for us, and we’re grateful for that. Except that we also live in a system where we couldn’t afford care otherwise. We couldn’t afford to pay for private care. I had to give up my (wonderfully well paid) job to care for Mikaere, and point blank, if it came to it, we couldn’t afford care for Mikaere outside the NHS.  Just to be really clear, we are not talking about luxury care for Mikaere. We’re talking the basics of what he needs to be safe and to live.

We rely on the NHS for Kai’s care, and it has a direct affect on his quality of life.

NHS underfunding is happening and it terrifies me.