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.

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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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On just in case

Mikaere was baptised today.  In the hospital, by his bedside. I hate that we're just-in-caseing this. Still, today we had family from both sides visiting, so, we smiled for the photo and our baby boy was christened.

 

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On taking each day as it comes

Despite yesterday being horrid for us, our little guy is still sitting at status quo. He's not awake. He's still seizing. He's still breathing by himself.  

Because he's on a course of steroids and not moving he's retaining all the fluid in his tissue and is swelling up like a balloon. His socks don't fit anymore, and we've been struggling to keep his feet warm (they do heel pricks to take blood for blood/gas tests, and it's easier/shorter if his feet are warm). 

My sister and Dad arrived yesterday from NZ, and they bought booties from my Mum with them, a size up so they fit his poor little feet! 

 

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We've also started more (!) medication. A diuretic to help with the swelling (because the edema could impact his breathing) and a potassium supplement, because the diuretic reduces potassium levels.  

Honestly, the amount of medication he's on is worrying, his body is so small! I'm hoping that once we can wean off some of the medication, hopefully next week or the week after, hopefully his body will respond and he'll recover. I feel like we're doing way too much, but each individual thing makes sense to do. I struggle with this, because he's only tiny.

I also battle daily with the drs on things like glycine levels and his bloods going to the right labs. I pick my battles, but oh, my heart. It's my job as his mama to worry, and to love on him. I want to trust his medical team, but they are so many of them and there's no one person taking the lead, no one person whose responsible or consistent - just me and Sam. And NKH is so rare, that for each new nurse, each new Consultant we answer the same questions, and I trust his team a bit less. So, I love on him, and I sing to him and Vaseline his lips, and I become his medical expert too. 

We can do this, my little guy. Please pull through! 

 

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On end of care directives

So. Again yesterday we that quality of life/quality of death conversation. I sat in a room with two Consultants from the PICU and our palliative care nurse from Great Ormond St.

When we had this conversation last time it was in the NiCU at C&W, and our little guy was fine. I couldn't get into the right headspace because not doing everything we could for our perfect little baby who was awake and beautiful seemed inconceivable.

Now my perfect little baby is essentially in a coma, with unknown brain function and one rubbish seizure could rob us of him. What's more today his seizures are long, 9 minutes, 10minutes, 11 minutes. Long enough that we're back up on the midazolam we were trying to wean him from.

So, we talk about quality of life, and we talk about his death. I cried. Literally, sobbed. No mother wants to talk about the death of her child, let alone the part where you're meant to let it happen. Where you do less to prevent it.

Worse, is that Sam wasn't there, he's ill today and was on the phone. I sat in a room with three medical professionals and they lead us through a dark, horrid set of questions.

So horrid. Do we ventilate if required? Or do we not? What about CPAP? Having to talk through exactly what level of intervention we would be okay with if things took a turn for the worse is horrid.

After much tears and discussion and internal struggle, we decided that ventilation and CPAP were too much, but oxygen, positioning and suction were okay. The guilt is overwhelming. That we have decided to not do everything possible to prolong his life, and trying to balance that with the sadness that for him, his life may not be pleasant and it would be kinder to not prolong it.

As parents we're devastated. I hate this. I positively absolutely loathe being in this position. My little baby was fine not even two weeks ago. He was awake, and we were loving on him so so hard. Now he's in a coma.

Come on babycakes, pull through. We love you so much.

PS I know I keep banging on about it, but we're still raising funds for NKH research. If our little guy pulls through, any hope of a future is currently at research level. Thank you to everyone, genuinely, who has donated. If you haven't yet, please consider putting a pound or two in the pot.

 

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On waiting it out

I feel like we're on a precipice and could go either way. Mikaere could improve or he could not improve.  The most reassuring part (for which I feel guilty about) is that it's not up to me. Mikaere is maxed out on all his meds, and we've done everything we can (there's an argument to be made for overstepping and have done more than we should have, too).

He could go either way and it's up to him. We hope for improvement. Hes stable at the moment, maybe more at a plateau than a precipice, but whether he decides to go up the mountain or down into the valley... okay. I need to stop with the metaphors because there is no good one really. We want him to get better. To wake up. To be seizure free.

Our baby is unresponsive. He's got wires everywhere and oh, my little guy. C'mon baby. Pull through. 

Update: he's holding his own with his airway so we removed the extra oxygen support. We're slowing weaning the midazolam and we hope the seizures stay away. Fingers crossed!  

 

 

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On leaving your baby behind

Nothing like a tiny bit of encouraging graffiti to make you feel a teeny tiny bit better when you have to leave the hospital without your baby.

 

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On PICU and hard decisions

It's depressing how familiar PICU is. The alarms are familiar. I knew exactly what they were the moment I walked in, a ventilator with likely low O2 stats, an finished infusion.

This PICU is nice. We have a large bay to ourselves (made larger because it's designed for a young adult sized bed, rather than a little Mikaere sized incubator. It's all open and airy and all the equipment is shiny and clever.

They also have beds. The boys sleep elsewhere on the ward but the ladies can sleep opposite the unit.

It's nice. And we have a lovely nurse and it's all 1-1.

It's just... The Fear has escalated as the measures we've gone through to stop the seizures are many, and to end up in the PICU feels like a kick to the face.

Kai is maxed out on so many of his meds. We're moving from oral to intravenous and we just, we can't get ontop of these seizures. 

Every Consultant keeps asking about ventilation and whether we want to go down that route if necessary. What they're really asking is what kind of quality of life would that be if he lived and couldn't get off the vent. Also, quality of death. If he's to die regardless of outcome then it doing it without being intubated would be better.

I can't believe we're thinking about his quality of death. He's only 11 weeks old. I don't want to be making decisions about his death.

I can't believe we're here. Hopefully, he won't need to be intubated and we won't need to make those kind of decisions.

C'mon baby. Please pull through.

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On going home without my baby

Leaving intensive care on Christmas without my baby is horrid. I can't believe this is happening to us again. This whole situation is horrid. I want my healthy little baby back.

 

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On Social Media Sad Face

I've had to stop looking at instagram. Everyone is having happy beautiful christmas's with their babies, and fancy foods and families and fun times.

We ate leftovers a friend very kindly dropped off for us, and today we watched our baby seize over and over and over again.

Worst Christmas ever.