Ellly

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

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.

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)

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.

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.

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.

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

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?

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! 

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.

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?

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

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.