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.
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.
I can’t even breathe – I really wanted to post something cute for Christmas Day. Something light hearted. A selfie of all of us in Christmas Jumpers, or his little feet in snowman socks.
Except that Christmas morning he started having seizures. Lots of seizures. Enough that the consultants visited us before doing rounds. Enough that we gave him rescue meds to give his brain a rest. Enough that the consultant called our neurologist at home, interrupting her Christmas morning to discuss an action plan.
Enough that she felt it important to know what our quality of life stance was. Whether we had a plan.
Oh. These conversations always happen in the early hours, when I’m sleep deprived and Sam’s not here. So tricky. So heartbreaking.
Our little guy, he is not doing as we hoped. But we have a cracking team of drs (one even dressed up as Santa and walked the wards giving our presents) and we know they’re thinking through all the things.
I know this, because we’ve started B6. It was something I suggested we look into, having heard something from another NKH mum.
One of the drs said she did some research after she went home last night, and while it’s a long shot we’ll have a look. So we’ve started it.
I appreciate that we’re all working together, and they take my straw grasping seriously, with consideration. I just want what’s best, and it turns out so do they.
I said a few days ago I wasn’t scared, because I knew what was going to happen. Now? Now I have The Fear. I don’t know what’s going to happen, but this unresponsive phase is going the same way it did when we were in NICU, except he’s already on the meds. We’re already increasing them, over and over again.
So, we take it day by day. And this Christmas Day, we eat all the chocolate and mince pies, listen to carols, watch donations come in (thank you!!!), and count how long all the seizures are. And we hope. We hope our little guy will wake up, that he’ll cry, and move. We hope tomorrow will be a better day. Faith and fortitude.
PS Did manage to take a Christmas Selfie
#nkhCanSuckIt
So, despite our resignation and sad faces about being in hospital for Christmas, its not all bad. I appreciate the lengths the hospital has gone to make the ward feel Christmas-y. The halls are filled with decorations (there are two giant air filled polar bears with scarves down the way). We had carollers yesterday. And there were volunteers who gave out wrapped presents for the kids and chocolates for the parents. We also got a giant helium balloon. The kind that are terribly expensive at theme parks.
No one chooses to be here, let alone over Christmas. But I appreciate the Christmas-y efforts.
I’ve let go of imagining what our future might look like. The life I thought Mikaere would have, the one I wished for him before we knew about NKH, we know that’s not a possibility anymore. Instead we moved to getting through one day to the next. Another day another day. As he got better, we were able to look a few days ahead. Then a week, then several weeks. That was before.
Now? Now we’ve regressed and everything has condensed down again. Our little guy isn’t doing so well. We’re back to a sleepy, unresponsive him. He’s stopped holding his head up. He no longer cries out with big healthy loud rage, but is more like a sad little kitten. He opens his eyes for a moment or two at a time.
It’s come on so suddenly. So the doctors here are chasing metabolic consultants in the early hours of the morning. We’re changing meds and we’ve put an NG tube in, just as a precaution.
Here’s what bothers me: this is reactive medical care that probably could have been avoided if we knew what his glycine levels were. Except it takes two weeks for his blood results to come back, and for the past two weeks we’ve outgrown two doses. What’s more, those two doses are blind, because we don’t know his levels. So stupid.
So. My baby is unresponsive, and has a tube across his beautiful cheeks.
We’re absolutely spending Christmas in hospital.
PS if you haven’t already seen, we’re raising funds for Kai’s first Christmas – justgiving.com/mikaere-xmas. If you’re able, please consider donating. We truly believe Kai’s future is tied to NKH research.
Another day. Breathe in, breathe out. So, we spoke to our neurologist yesterday. Kai’s eeg showed signs of Hypsarrhythmia, which indicates infantile spasms, a kind of seizure. They’re going to up his dose of keppra, and start him up on a super high dose of steroids.
Because the steroids compromise his immune system, and his blood pressure and urine need to be checked every few days. Womp womp. On top of that, we’re pretty sure he’s got some kind of cold/infection, which means he’s having more seizures. Womp womp. Upside is that we’ve just been moved out of the infectious diseases ward (not that he was ever infectious, it was just where the empty bed spot was). Good job us. Still, it’s so heartbreaking to hear his whimper of a cry when we’re so used to extreme hulk like rage.
So, the plan is to stay till Christmas Eve, and be back to the hospital post Christmas for an eeg. Fingers crossed we can stick to the plan. Cmon little guy, tell your brain to sort itself out.
You can tell the one off hospital parents from those that are there regularly. The regulars know the nurses names and have sleeping bags and know how to turn the spO2 alarms off. They’ve already got all the snacks and they’re just… they’re just calm. This isn’t their first rodeo.
The one offs are scared, they worry about the beeping things and they cry in the parents room. It’s heartbreaking.
Were somewhere in between. I have a sleeping bag this time, for bunking down on the weird single seat pull out bed. I don’t yet know all the nurses names but I don’t cry in the parents room either. I know where to go for a meal or where the good bathrooms are. I have all the meds, and I’m the one that draws them up and administers them. I have a feeling that we’re going to become old hats at hospital visits.
I think mostly I’m not scared. This visit I know is to figure out what Kai’s new ‘normal brain activity’ looks like, since we’ve started on keppra. To understand if the clusters are going to be the new normal, and to understand if his meds need tweaking again.
So, we had an eeg. And we’re waiting on results. Hopefully they’ll have them soon. Hopefully, after that we’ll be able to go home!
Everyday I grieve the alternate possibility, the one where Kai landed in the solid 75% and inherited one of the genes that could process glycine.
Where his little brain wasn’t having seizures, and he didn’t have to be on bucket loads of medication every six hours, where his future was bright and relatively pain free by comparison.
I feel robbed, for me, and Sam as parents. But mostly for our little guy – he’ll never know life like we do. He’ll never not know difficulty, and pain. He’ll have to fight his way through because his body literally can’t do what ours can, and it’s damaging his brain in the process.
I’m not sure exactly how to be okay with that. That there isn’t a lot I can do to prevent it. I have to put my faith in the research. Of the four researchers we know about, only one is looking at treatments. It’s with gene therapy, and I can’t help but feel it’s his future.
We started fundraising a small amount for Kai’s first Christmas.
www.justgiving.com/mikaere-xmas
We’ve already hit our target, which is a little overwhelming. There is so much love for our little family, I’m so grateful. I do believe it’s his future, which makes me feel like the more raise the better his chances.
We’ll see. If not for him than for kids that come after.
