On accepting help

Okay. I'm a proud person. A fiercely independent proud person, who hates asking for help and doesn't often accept help unless I'm drowning. However, almost every message or visit comes with a phrase 'let us know what we can do to help' or 'do you need anything?' or 'what can we do?'  I'm never sure how to answer that, because answering became another thing to think about. Knowing what we need requires thought and some time to figure it out, my brain and heart are so full dealing with a kajillion other things that delegating just seems more difficult than it should. Add that to my pride and all those offers of help fall to the wayside.

Most my friends know this about me, so our closest people just show up. They make it easy, so we don't have to ask. That worked really well when it was a visit at the hospital, taking us to dinner, visiting on Christmas Day with Christmas food, bringing clean clothes or collecting the mail. But as time has gone on and more people heard about our story, and the outpouring of love has been immense... and more people started just sending stuff. 

We have so much food. We're drowning in it. I should mention the hospice feeds us three meals plus cake and snacks every day - so for people to send us more food on top of that is crazy. One of Sam's friends was so so generous and sent us boxes and boxes of wet wipes and muslins and bibs (thanks John!).

That's more stuff than we could ever use, so we've donated the lions share to the hospice. It was then that we realised that people were going to send things whether we asked or not, and it might be better to direct the goodwill into helpful directions.

So, we set up a page: How to Help.

I feel weird asking for help, or even having a page with things on it. However, there are a few things that would be more helpful than the copious amounts of food we keep receiving, so. We have page, with help requests. 

So much love to everyone for the offers of help. If you decide that you do want to help, please don't send food. Pick something small off the list if you feel moved to. We appreciate every small action, and offer of help, so thank you. Thank you to everyone who has sent a message of love, who has sent food, and who has been there.  We love you guys. We can't imagine getting through something like this without you guys.

x

On accepting the special needs/disability badge

The last three months have been tricky... all of the baby/medical stuff of the day to day aside, this whole time I feel like I'm still coming to terms with the idea that I'm raising a special needs child. A disabled child. It's a concept/reality I've been mulling over while my everyday unfolds around me.

For a long time I ignored the future possibilities, my baby was beautiful and you'd never know he had a horrid metabolic issue. He was just a little baby boy and if no one mentioned anything about disabled futures I could live in the happy denial bubble indefinitely, and I did. Right up until we were back in hospital. Then we switched between no future with horrid end of life directives and whatever future would be allowed to us once the seizures were done messing up Kai's brain. It was made clear that damage was being done with all his seizures.

When we came to hospice we were shown what that second future might look like. There are some severely disabled children here. No one asks or tells about diagnosis's. There are enough children here in wheelchairs, who are nonverbal and different. Disabled. Children with special needs. And it's difficult, facing them at every meal, in the corridors, with the different noises and teeth grinding and the drool. The odd movements, the vacant stares, the different facial expressions. Almost all the nonverbal kids are either eating paste or fed through pumps. They're talked over the top of, or when they're talked to, it's in a funny sing song rhetorical way. And every time I see them, I think this is our future.

It took a three days or so at hospice before I stopped looking away like I would have in the before. Before, while I was out and about, if there was a disabled child in a wheelchair I would have said it was rude to stare and averted my gaze. Now I know it wasn't that it was rude at all, but that I was uncomfortable. I was uncomfortable with those less able than myself. Shame on me.

Now I greet these kids by name, and I talk to them. I ask about their days and I study them, while I wait for a response. Sometimes I get one, a noise, a movement. Sometimes I don't.

I watch their parents, who laugh and mop up the drool and talk and sing and love on their kids so hard. The parents here are joyous, like they've taken it all in their stride and are doing the best they can by their kids. Don't get me wrong, I'm sure there is a difficult side, but here at hospice when there is so much help and support respite parents are joyous with the time and help and the break.

I'm still coming to terms a very very different world than what I imagined. Before Kai was born I'd planned to go back to work. Letting go of that plan, the one where Kai is healthy and I can go back to work was difficult. But this week I emailed my accountant to begin the process of closing down my company. I stopped drawing a salary. I closed off all the services I won't be using. And I hate this, I hate that I'm not earning, that I'm not supporting myself independently or contributing financially and having to rely on Sam for money. I've had to swallow my pride and recognise that this is what's best for our family, that Kai's needs go over and above a typical 3 month old, and he will forever need help. That this phase of intense caring is not temporary, he will not grow and become more independent. He will forever need me to be his carer.

And so I filled out the 30 page form for the disability allowance. The first question took me a good day or two to answer. It asks if we're applying under special conditions. If, according to his doctors, whether his disorder is terminal and is not expected to survive the next six months.

I ticked the yes box, at the urging of our nurses. I felt like I was betraying Kai and my hope for him. The next 29 pages were equally brutal. Each question asked for extreme detail as to why my son was disabled. And with every question I answered the denial bubble took a beating. By the end of the form it had popped, and I was exhausted, and sad. So so so sad.

Accepting our reality and our future, grieving our dreams for our son, and living each day as it comes and no more has been horrid. I'm still wrangling with it, to be fair.

Pragmatically I know that I need to get through this dark patch to the other side, where I can move forward and do all the things I can for Kai, to improve his quality of life.

Emotionally I'm not there yet.

 

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On fighting NG tubes

Since Kai has woken up he's pulled his NG tube out four times in three days. We've had to mitten his hands to keep him from yanking it out. I struggle, because I can't imagine the tube is pleasant. He gets his feed pumped into him, 140ml of milk over an hour and half, followed by a 2.5 hour break. He's so frustrated, when he's hungry he lets you know, but he's so unsatisfied by the slow dribble. He can't suck in a coordinated fashion and we worry that he'll aspirate himself so he has the tube.

Every now and then we'll try a bottle, but he struggles with that. Sometimes he's fine, sometimes he's not. And until he can be consistent with the bottle, he must have the tube for his meds.

He may always have a tube. We're beginning to think about a g-tube. A tube directly into his belly. I'm pretty sure it'll be easier and more pleasant for everyone, though it's definitely an idea we've had to come to terms with. In the beginning, I was determined to get him home from the NICU so I could pretend that NKH was some terrible terrible nightmare that we could shake off. And for three beautiful weeks, it was. Sure there was the daily meds, but it wasn't this. It wasn't 24/7 nursing care. With the feeds and pumps and syringe drivers, with the four-six hourly meds and hourly checking of his subcut - the needle his has in his leg so they can pump anti epileptics into his body around the clock.

I can't change any of those things, and I'm sorry that when Kai pulls out the NG tube we have to hold him down to put another one back in. Still, every time he does it I want to high five him, and silently cheer him on for fighting it. Everyday, he fights.

He's getting pretty good at getting the mittens off too. You go little guy.

 

PS - those cheeks without the tube though! 

PS - those cheeks without the tube though! 

On experts and metabolic consultants

Today we bundled our little guy up and went to see our metabolic consultant and to get bloods. It's been a while since we've seen our consultant guy, but I won't lie, I was disappointed.

NKH is rare. So rare. Our metabolic guy has a kajillion rare metabolic disorders to worry about, and we are one of many.

Originally, I wanted our metabolic guy to be our hero. To be the consistent doctor guy in a world of a kajillion consultants, the guy who would help us manage our NKH day to day, to slow any deterioration and halt the acute episodes, who would have all the answers to our questions.

He doesn't. He doesn't because there are no answers. He doesn't have a magic wand. He doesn't have the time or the energy. It's gotten to the point, where three months in, I as an NKH parent know more about how to manage NKH than our metabolic consultant. I am the expert. And I know this because he came right out and said it. While NKH is small segment of our metabolic consultants job, NKH is our life.

But I'm scared to be the expert. I'm overwhelmed with the enormity of it. I feel like I can't possibly know enough or be enough, that I will do anything and everything I possibly can for my little guy and it won't be enough. That he'll suffer because of my mistakes, because we can only move forward by trial and error now.

Like how my decision to go ahead with 8 week immunisations put kai in hospital. Or by not insisting on two weekly glycine bloods we had a six week hole where we were filling Kai's body with meds willy nilly, instead of with data and intention.

I don't feel worthy, or capable or enough to be the expert that Kai needs, and I'm scared to be the expert, and angry that our metabolic guy has been found lacking (not his fault) in what we hoped him to be.

Don't get me wrong, I will and have stepped up to focus on Kai and NKH. To read the studies and fight the kajillion consultants for what I think is necessary, but I'm overwhelmed with the enormity of what lies ahead, and I worry that I'm not enough. It's like needing a chainsaw to chop down an ginormous tree and all you have is a butter knife. That's how I feel about me being the expert, and I feel like even my best causes mistakes that cost Kai dearly.

To put it clearly, here is the massive tree: my baby suffers daily. He is not a normal, happy go lucky three month old. He has seizures that cause screaming fits and comas. We pump him full of meds that are painful for his little belly. He has a tube down his nose for feeding, and a needle permanently in his leg for 24/7 meds.

Even small developmental things: he doesn't smile socially, or babble. His gaze is odd, he can't hold his head up, he doesn't reach for things. Right now he doesn't even have a coordinated suck like he used to. And sure, with time, physio and help he may gain some of those skills but regardless, my baby has a rare metabolic disorder and suffers every day. My babies disorder is terminal.

Putting all the raw emotion out there plain: I feel too small, and too powerless to be his expert. I'm scared my best may not be enough for him, and I worry that he will suffer when my best is all he has. I worry I'm a butter knife when I need to be a chainsaw.

I know I'm not alone in this. There is a wonderful community of NKH parents on facebook. Some of them are crazy, and some have courage I can't even understand. But a lot of them are smart and amazing and they've been where I am. I know I'm not alone in this (I found my tribe) but that doesn't mean I don't feel all the things I do.

So. We went and saw our metabolic Consultant and I was disappointed. He is not the hero or expert I hoped he'd be. Turns out I have to the chainsaw hero, and I find myself lacking.

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Edit: Sometimes when I think on this, I remember something that another NKH Mum said. I'm grateful Kai came to us, for a while there was a lot of 'why us?' but now I think of all the people I know, and how they live their lives and the choices they have made and sure, some of them I think could do what we do, they could live the special needs life and do their best by a special needs baby. But for a large chunk of people in my past, I think thank fuck Kai came to us and not them. Thank fuck.

On poop updates

He pooped!  it's ridiculous how happy I am about that, even if Kai seems nonplussed about it.

 

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On baby massage and poop habits

Kai's getting more awake with every day. He was a bit less dopey today, his eyes a little less heavily lidded. It's so nice to see him have proper awake/asleep times. Nice to see him wriggle a bit more. He's not yet moving his legs like he used to, but his arms can now put his fists within reaching distance of his mouth, much to his delight.

A few days ago it was clear my milk supply wasn't able to keep up with him. We've used up the frozen stash, so I'm power pumping, and when I've pumped enough he has it, and when I haven't we do half breast milk, half formula. However with this change (and him waking up a bit) has meant he's not pooped. He hasn't pooped in three days. He doesn't seem uncomfortable, but my little guy used to be a champion pooper, pooping every 3-4 hours or so. Three days is definitely unusual for him. (Also, the pre-mum me would have been so unimpressed about sharing her hypothetical baby's pooping habits. The post-mum me is obsessed, and sharing poop habits seems the least worrying of things to share).

Anyway, the hospice has a therapist here who does baby massage. She filled up a cushion with warm water, and we lay Kai out on it. He went to sleep instantly and had a lovely half hour baby massage. It was pretty lush, actually. He was so so relaxed. I was too, but I think it's because there was some lovely calm music playing. I almost went to sleep sitting up next to him. I'm glad hospice has all these things available for us. Even if it doesn't help the pooping, it was such a nice thing to have do. 

 

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On doing the unexpected

We possibly were a bit ambitious, but as Mikaere was more awake we took the opportunity to take him swimming. It's something I've wanted to do since I was pregnant with him, and I wasn't sure with all his hospital visits and illnesses whether we'd ever get the chance.

They have a pretty nice pool here at the hospice, where the air is as warm as the pool so it's not too chilly when you get out. The nurses are keen to go the extra mile for us so we can swim, and there's music and all sorts of floaty things. There was a small matter of his two ivs and his NG, but we put a bung on the end of the NG, and dressings over the midline and the subcut, wrapping the drivers up in a towel on the side and off we went.

We did our best to keep the midline out of the water, floating his arm on a floaty thing, but oh. Oh my days. It's been a while, but I was so so happy. He seemed to enjoy it too, kicking his legs a little. He was wide awake the whole time, and cried his little kitten cries when we got out.

Oh my little guy, there is something huge about doing the things with you we thought we'd never be able to. Our dreams for you have gotten much smaller, but I'll take the tiny wins. Swimming, I'm so so glad you were able to experience that. So so glad!

 

 

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On the chubbiest of all cheeks

Also, our guy has crazy chipmunk cheeks right now. He's put on a lot of weight and as he wasn't moving so much before (he had two states: seizing or sedated) it's all gone straight to his cheeks. The difference from before we went into hospital and now is crazy. I won't post a picture, but he has the most beautiful thigh rolls I've ever seen!

 

 Pre three month curse cheeks

 Pre three month curse cheeks

Yesterday's cheeks

Yesterday's cheeks

On the beginning of an upswing?

Kai woke up a bit today. Opened his eyes (!!!!!!!!), and looked around. His gaze wasn't exactly a normal baby gaze, but I'll take it. He opened his eyes!!

To be fair, he looked like a baby on drugs. Super dopey, eyes heavily lidded. Which he is, really. He's on so many drugs so that he woke up today is really quite impressive. He's also been babbling. Not a lot, not a stream of baby noises. Just the occasional sound but oh, hearing his voice!  I've missed hearing it. I cried when I first heard his little mewl.

There's also been lots less seizures. We've been practicing baby massage and we discovered that with a bit of foot/head massage we could calm him and head of he seizure. So now he's getting an awful lot of baby massage.

He's also got a silly amount of wind, which we struggle with. He's not really burping. Or pooping. I'm suddenly very very involved with the minute details of my babies digestive system. I've never been interested in his farts till now.

He's a very different baby than he was a few weeks ago, before we went in. I can already see the beginnings of what the seizures and NKH has done to my little guy. It's bittersweet, I'm heartbroken to see the deterioration but so so so pleased he woke. I'm hoping that as time passes he'll improve and we can go back to being a bit more like we were. Fingers crossed!

PS You guys!! Thank you thank you thank you for the donations. They're still rolling in and we're so so so amazed at how much we've raised!! Also, for everyone that has shared our story or the just giving page, thank you. It means everything to us x

 

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On plastercasts

The hospice has shown no end of kindness to us. They're constantly offering cups of tea, and feeding us copious amounts of food. Anything we've asked for they've tried to cater to, they're so kind. They even offer us things we wouldn't have thought of.

Today we took plaster casts of Kai's hands and feet. It was an odd experience made darker when I asked if they do this for all the kids (only the terminally ill ones, was the straight forward response). Still, I enjoyed it.

We made up the mould mixture, and I held Kai's hand while it was plunged into a ziplock bag with all the stuff. Slowly the purple mixture turned gummy, and solid. Like silicone. After a few minutes I was able to pull our hands out and tada, mould! We also did plaster casts of his hands and feet, and took his little fingerprints with magic ink (the kind that is invisible on skin, then after pressing to paper the print appears).

It was a lovely thing to do, but tinged with a little sadness, knowing that we're creating remembrance pieces. Honestly, we're holding onto every moment right now. 

 

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On silent seizures

Eeg results came back. It looks like Kai is having seizures all the time, even when it's not obvious he's having them. Oh my days. Devastated.

 

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On medication

The nurses and doctors talk to me about meds. Going up on the phenobarb and down on the  midazolam  but only the continuous iv, the bolus will stay the same.  Perhaps we'll try the buccal, even though he didn't respond last time.... they come and make these decisions and they're very good about making me feel involved.

Except that I move between stepping forward and stepping back. Before we went into hospital I knew the ins and outs of all the meds he was on. Now?

Now I nod. And hope. I don't understand the significance of what's being changed, I know the overall goals (wean him from midazolam/B6/prednisolone so he's only on the phenobarb and zonisomide) and why (because we're not sure his seizures are B6 related, because the prednisolone is only appropriate at a high dose for a short time and causes high blood pressure etc etc)

But he's just on so many anti-epileptics. So many. I don't know how they work, I don't understand the interactions, I don't know them. We change the levels so much, there are so many moving parts and looking at him, I have no idea what's working and what's not. Add in that almost all of them have a loading time before they work... I'm overwhelmed.

I consider myself a smart person. I know to research the shit out of whatever it is that I want. But this? There are so many meds, so many different moving parts and I'm exhausted. How do people do this? I'm torn between wanting to be up to speed on what medically is happening with my son, and dropping that ball from the pile I'm juggling and trusting the medical professionals.

It's just... the medical professionals don't always know what's best. They don't know NKH, they don't know Kai. Two weeks ago a neurologist pretty much said that there was nothing more they could do with the seizures, that they'd already tried the 'big guns' and Kai wasn't responding. Dick head. That makes me angry, because I know we haven't tried a ketogenic diet no CBD oil. What else is out there that I don't know about that we could try?

But then I doubt myself - is there a reason that he didn't mention the diet or the CBD oil? Is there a reason they will not work, is that why he didn't mention them? Did he not know about them? Or does he think that Kai is so far gone it's not worth trying?

Struggle city. I swing through phases of wanting to trust the medical consultants and 100% not trusting them at all.

There are a few I listen to. The consultants at hospice are amazing, I feel like they're on Team Kai where Kai is the focus. Where they can see him, and understand that NKH has an effect on how he processes. They suggest things, and are proactive.

Some others, like the neurologist who told me there nothing left, he's NOT on Team Kai. He's looking at symptoms and hospital protocol. Or the metabolic guy, now that he's done the diagnosis he's reactive, not proactive. I feel like he knows that NKH has no cure, and dabbles in Kai's care rather than taking the lead.

I think that's why trusting the medical staff is difficult.

Sigh.

----

PS: Quick insight into Kai's Medication Regime, he's on a continuous feed of midazolam (into a midline in his arm) and phenobarbital (into a subcut in his leg). He has an NG tube, and orally takes nine different medications every day. Every four - six hours he has at least two of them. At 6pm he has 7 of them. It's very very complex. I can't believe my little baby has so many drugs in his system.

PPS: Still so grateful for the donations. Over £7k now! You guys are amazing x

 

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On hospice stories

It's a bit different socially at hospice, it's not like NICU or PICU where you band together in hope. In hospice, I struggle. I don't want to take on another story of woe, another story where everything has been tried and the only avenue left is quiet acceptance. It's hard to hear. Now, when new people arrive at the hospice in the evening, I tend to eat fast and leave the communal table before the stories come out. It's hard not to hear though. The brother with terminal cancer, the boy who isn't doing well, the transfer from intensive care.

In contrast, you can tell who the regulars are, the ones here for respite. They're cheerful, and talkative. They smile and laugh and know all the nurses names. But once you get talking, they have stories too.

Everyone has a story here, and none of them are nice stories with a happy ending. They're stories of hardship. They may have been told with a wry grin but I'm still struck with how everyone moves forward with grim determination. That the children here are described as little fighters thanks to the struggles they've had. No one chooses to be at hospice, no one chooses to be on the hospice service. No one chooses the path we're all walking.

I struggle. The children here are either very very sick, or profoundly disabled. I feel like I'm looking at Kai's future and it's heartbreaking. It's so so so heartbreaking. Letting go of the future we imagined for our baby and ourselves, grieving the loss.

Being in hospice is quiet, and sedate. But now there is no loud distraction from all the fear and grieving.

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Please wake up baby. Please stop seizing. We're giving rescue meds 15-20 times a day. You're breaking our hearts little guy.

Ps - very aware of how doom and gloom I am right now. It's depressing for me to be in this particular place as I'm sure it is for you to read about it.

Pps - justgiving.com/mikaere-xmas So so so grateful to everyone that has donated! We're almost at £7k, which is unbelievable!! We're so grateful (and glad that together we can stick it to NKH)

Dear Kai - Month Three

Dear Kai,

Oh my beautiful baby. I don’t know where to begin - this month started on such a high note. We spent a wonderful weekend with your Grandparents up in Toddington - your first road trip! You were so loved - fussed over by Aunty Josie and her friends, cuddles with Grandma + Grandad. You even met Great Grandma Majorie - it was amazing to see four generations hanging out on the couch together. 

We went to church too, and met so many of Grandma’s Church friends. After your rocky start, you’re practically famous in in Toddington. We were so pleased to show you off, to shake away the cobwebs of hospital and move forward towards little normality. You loved it too - there was so much love, so many people to coo over you and replace the dummy you kept spitting out just for fun. 

You did have a little bit of reflux, and we were worried about your weight plateau a little, but generally you were your happy grizzly little self. 

Your deterioration happened a little while after - the NKH Three Month Curse, popping up right after we got your immunisations. I’ll forever feel guilty because I think my decision to get your immunisations acted as a catalyst. Oh my baby boy, I’m so sorry.

You had seizure after seizure. We were admitted into hospital and an eeg confirmed it by showing hypsarrhythimia. Devastation doesn’t even cover it, we had hoped we might have longer before the seizures came. Nonketotic Hyperglycinemia can suck it. 

And oh how you fought my little guy. You tried and it was heartbreaking to watch. We stayed on the ward for a few days before we were discharged, when it looked like you were recovering. We lasted three days before, oh baby, you had your first five minute+ seizure. We were out with our NCT friends, and it was the first time I’d seen the difference between NKH and not NKH, even before your seizure happened. I guess this is our path now little guy. Where you go, Daddy and I will follow. 

You’ve not been home since that seizure. We spent a week on the ward, where you got more and more distant. You stopped opening your eyes. You stopped crying. You stopped moving. The only constant were seizures, happening more and more frequently.

And then on Christmas Day, when we couldn't stop them and you were seizing constantly, you were admitted to Intensive Care. Oh my little guy. We love you so much, and in a place like intensive care that love is accompanied by so much fear. We were asked to consider terrible scenarios, and make horrific decisions for you. Through this whole time we worried for you, we did everything we could to ensure any decision made was what was best for you, but it’s difficult baby. Trying to differentiate what we’d like for you, and whats best for you is so so difficult. It was shortly after one of these conversations that you were baptised. We would have loved to have had a beautiful ceremony in a church, with you in one of those fancy long white Christening Gowns but alas, that was not our story. It was a sweet little ceremony done in intensive care, the curtain closed against the business of the ICU with your Grandparents.  

We didn’t celebrate your first Christmas like we wanted to either, but we did set up a fundraising scheme for your first Christmas. Our friends and family rose the occasion and we’ve raised several thousand pounds towards NKH research. We’re so pleased! We hold on to the dream that you have a future, that one day the research will provide the reality to our hope and your future will be comfortable and happy. In the meantime, we did try enjoy what there was. You were given a giant snowman balloon, and on Christmas Eve Grandma + Grandad came down to visit, as well as Uncle Michael + Aunty Mathilde. It was a fairly cheery time, even if you slept through it all.

Shortly after being admitted to Intensive Care, Grandad Gedge and Aunty Liss came to stay for a week. We settled into a routine where we could be with you, switching two people in and out. You spent every day in someones arms, as we held your hand and hoped, letting the nurses know when you seized, which you did frequently. 

When the New Year rang in, Daddy and I were right by your cribside in intensive care. There’s an excellent view from the fifth floor across the London skyline, and on the horizon we watched the fireworks that happened along Southbank. It was pretty, and scary - we don’t know what our future holds and we’re desperate for you to open your beautiful little eyes again.

It often seemed like you were so close to the surface, so close to breaking through into consciousness. But then a seizure would take you away, and we’d sedate you. Hoping to give your brain rest.

We moved to Hospice in the New Year. For us it seemed like the most sensible choice, and we hope that a more relaxed setting will help. I’ve been ignoring the End of Life part of Hospice. I don’t think we’re there yet. I’m hopeful that whatever wracked your little body just needs a little time and love to recover. 

We’re still here as we celebrate your third month. We’re so hopeful, and we love you so much little guy. Every day we spend with you, we’re so hopeful. You’ve changed the trajectory of our lives in such a fundamental way, and I can’t imagine a world without you in it. 

Arohanui my little man, more than you know.

Mama x

On being in hospice

We've been at hospice almost a week now, and I struggle to organise my thoughts in a manner appropriate for sharing.

It's quiet at hospice. Slower. We have a room next to his (and a small set of rooms upstairs, too, so Sam can work and grandparents stay). Our rooms look out into the garden and it's all very sedate. There's a quiet routine here, and we've slipped into it.

The quiet is disarming. Before at the hospital everything happened so quickly, we were living on adrenaline and reacting to whatever came our way. It's harder here - the slow sedate waiting to see what Mikaere does is difficult. It's given us time and space and all of the emotions from the last three weeks have caught up with us. I'm exhausted. There is a lot of quiet private crying as we process.

Very very different to the hospital, with all the beeping and alarms and people. I'm not sure how I feel about the move. If we were home and he was well, it would be loud. Crying and music and normality.

There is no hiding in the noise or busy-ness that was the hospital like we were. There aren't any monitors here, which threw me for a bit. We used his heart rate and O2 stats to understand what was seizure and what was not. We had a portable one here but it was never accurate so we took it off, taking our readings from Kai instead. We don't buzz the nurses anymore. We quietly pad out into the hall and poke our heads into their offices to let them know he's x minutes into what could be a seizure. It's hard to tell what is and isn't. Regardless - they give him a bolus anyway.

Part of it I think the way we're dealing with seizures is essentially sedation. Every time Kai seizes (which is moving more towards a big seizure or a set of clusters every hour/hour and a half) we pump extra drugs into his system and he sleeps. The nurses here call it 'settled' rather than sedation.
It's a different kind of struggle.

My first night here I sat up till 3am with him. The nurses were busy with meds and getting him sorted, so I sat with him, letting them know when a seizure wracked his little body. I struggled though, being so sleep deprived.


Everyone keeps telling me I need to take care of myself, but what they don't understand is that if it's between me and my baby I will always put my babies needs first. If there is no one around to be on seizure watch, I will stay up and watch him. If he needs anything, I'm there. I can do switch out with Sam and the nurses when they're there and available, but if they're not, if they're busy, if there's even the remotest chance one of his subtle seizures will be missed, I'm there. It's my job as his mama to be there, to make sure he's catered for, to worry and love on hum. It sounds stupid,  but I've never taken a job as seriously as I have this one. 

Once I got to know the nurses and the system, there was a bit more trust and I was able to sleep. Everyone here keeps saying 'lean on them' but I struggle with that. I don't want to lean on them. I feel guilty for leaving my baby with the nurses every night while I sleep. I feel guilty that I can't do everything my baby needs.


Being in hospice is hard.

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On sirens and blue lights

We've been transferred to hospice. Kai started seizing on the ambulance ride out, so we turned the lights on and every time we hit traffic we used the sirens.

Seizures and worry for my baby aside, having traffic move out of your way like magic was pretty amazing.

 

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On after Christmas Christmas trees

Our Christmas tree is still up, with all the gifts unopened beneath them. Christmas Day was when everything nose dived. It definitely wasn't how we planned to spend our first Christmas as a little family, and aligning what has happened with how I had imagined Christmas to be is just... overwhelming. Trying to understand where we are and how we got here and where to go next is impossible right now - we're still just reacting to whatever comes our way. So we've left the tree and gifts and everything where they are. I guess we'll deal with the leftover Christmas and everything else later.

 

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On PICU sleepovers

It's becoming increasingly clear how valuable and game changing a good nurse can be. We had one nurse go out of her way to accommodate us - working around hospital protocol so I could stay the night with Kai.

They rolled a hospital bed into Kai's bay, right alongside his incubator. I changed into pjs and padded quietly through the dark PICU, Sam had already scooped him from the incubator and oh. Being so close to him, even if he did have all the monitors and wires, not having to leave him, having him so close, cuddled right next to me the whole night oh oh oh.

I used to take this for granted when he was at home. After the 3am feed I'd burp him and instead of getting out of bed to put him down in the crib, I'd slide him down between me and Sam knowing that in a few hours we'd be doing the 6am feed. Sam would wake and would tell me to put him back in the crib, but I never did.

I'm glad now, that when he was home I took the extra cuddles, having him within touching distance.

I didn't sleep well, in the dark of the PICU there were beeps all night, people coming and going. There was someone else's emergency that happened at who knows what time, my heart broke a little for them. And then there were the seizures. Oh the seizures.

They happen so often and go on for so long. We give break through med again and again and I hope, I hope his body finds the time to rest in between. I wonder though, how much rest, proper good rest,  he gets when he's sedated like this.

Still, I'll take every night I can with him, seizures not. I'm hopeful we'll eventually get the seizures under control and he'll be able to rest under his own steam. Fingers crossed.

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As always, we're still fundraising for NKH research. If you've donated, thank you - genuinely thank you. If you haven't and you're able, please consider donating even just a small amount. It has such a profound effect on what research can be done and that ripples out to the NKH community. justgiving.com/mikaere-xmas

 

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On conversations with neurologists

I've never had such distance within myself before. What I know intellectually and what I feel emotionally are worlds apart, and they appear at different times. We talked to a neurologist yesterday. We sat down with two doctors and a consultant and we discussed the plan for Kai and his not even close to being controlled seizures. We had that discussion where you leverage the long term (because he's unlikely to have a long term) against keeping him comfortable.

See, the thing with seizures is that you stop them by putting the brain to sleep, with sedation. If we sedate Kai too much, he'll stop breathing. If we don't handle the seizures, he'll stop breathing while having one. We haven't found the magic spot between the two scenarios, the one where the seizures are controlled and he's able to wake. In the meantime his body is pumped full of so many drugs. So so so many drugs.

I sat through this not very positive conversation with the neuro team and I was calm. I asked questions about risks and alternatives and what happens if we do nothing like I'm meant to and it all circled back to what is the main goal for Kai right now (read: make him comfortable so he can pass on. I can't even believe I'm writing that). 

I was calm while talking to the neuro guy. It wasn't hard. I was logical and asked all the questions I wanted to.

Emotionally? Emotionally I was worlds away. Emotionally I was raging - I felt like we were being asked to give up on our little guy by not trying each and every drug we could. Logic would kick in (again, what's best for Kai when we can't cure the underlying disorder causing the seizures?) and each time it did I would rage at how unfair this whole situation is. He's so beautiful and this whole thing is wretched and so royally unfair. 

I held it all in until we had to leave. Leaving each time is my undoing, as we walked out of his room and down the corridor I cried. So hard, sobbing into Sam's shirt next to the elevator. The talk with the neuro, watching my little guy seize over and over, the mundane beside sit while we wait for the next seizure. Holding his little hand when he does seize. Having to leave him in the care of others overnight. How does anyone do this?!

What other choice do we have but to continue on? We love our little guy so much it's ridiculous. I'm scared for him, again stuck between the rock (where he has seizures and has a hard, not fun life ahead) and a hard place (death). I wish for neither of these options for my little guy.

I know that I'm presenting the negative, the fear. Writing it out has been therapeutic. I'm also aware that it's a bit sensationalist. I've opened up our private little world to everyone with an internet connection, which feels quite wrong and freeing at the same time.

We've had such an outpouring of love from so many people. Or nearest and dearest, people we once knew and from strangers. I've had so many emails and comments and messages that have made me cry (I cry so much now) and just, I think if I hadn't shared and we didn't have such a village around us I'm not sure what position we'd be in even now. Plus this way everyone knows and I don't need to explain anything to anyone. How do you explain this whole situation?

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Edit: In attempt to share a few more upbeat things, we made friends with the 16 year old who was in the bed next to us while we were on the ward and, after a hard slog he finally got discharged! High five him! 

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Also, one of the nurses took pity on us, and not only did Kai get fun sensory lights for his incubator, but they're letting me stay over the night for baby cuddles. I am SO excited to not have to leave tonight.

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Edit #2: As of this morning we've raised £6k+ for NKH research(!!!!). Considering my first goal was set at £250, we are overwhelmed with the support. I feel a bit cheeky asking, but if you haven't already shared it, would you mind sharing our campaign?

On marathons

This hospital visit is a horrid marathon. Our little guy is still unresponsive, still seizing. We're trying all sorts of medications, but we're 'just trying' everything. There is nothing intentional about his current medical plan. 

I am struggling. I am struggling so hard. On New Years I sat next to Sam, the love of my life, the father of my son and argued about my babies inevitable death. I was crying when the skyline out the hospital window exploded with fireworks, ringing in the New Year. I've been avoiding social media,  because all the posts were about the happy 2016 highlights and the hopes for 2017. I don't begrudge anyone their happiness, but it's hard to watch from the sidelines. Everyone seems to be so carefree. 

We are getting to the end of the tinkering that we can do. I feel so defeated. I've moved from extreme research into extreme escapism (I've read I don't know how many books, all fiction, and I couldnt tell you what happened in any of them). I just, watching your baby get worse, from 30 second seizures to a minute, two minutes, is so rough. Yesterday Kai's normal was five minutes. Today we had a 20 minute seizure.  

Watching your baby thrash, watching his heart rate rocket and his O2 stats drop... each time I grasp for someone's hand and try not to burst into tears. Each time I wonder if this is it. The long hours of waiting interpursed with the moments of intense fear while we wait for his seizure to self resolve... this is an unbelievable emotional marathon and I am struggling. Yesterday we were hopeful he might wake up,  but he didn't. Not really. Today he's much worse than yesterday.

People keep offering help but I don't have anything to ask for, I don't have the emotional or mental capacity to know what help we need. My Dad and sister are here, which I'm so grateful for. Still, thank you everyone for the love and the messages.

I keep meaning to send messages to thank everyone who has donated to the research fund, but I don't have the emotional capacity. Know that we've seen each donation come in and we're so grateful. I got a message today from Emma (Joe's Mum) cheering us on, which was so nice.  I feel that we're making a difference, placing trust in his future, and the future of other NKH kids.

Faith and Fortitude, hopefully tomorrow will be better x

 

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