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!

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

Yesterday’s cheeks

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

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. 

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.

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

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.