#teammikaere

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.

We’re staying in for at least two more nights. I want to cry.  

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.

I don’t know where to begin. I’ve been intentionally a bit vague and distant on the blog lately, because so much as gone on. I’m not going to fill in the backstory. I’m just going to begin and we’ll move forward from here.

Small little baby posts, I think.

So. No seizures today – that feels huge. It looks like Keppra is doing it’s thing. I worry that Kai is super grizzly, but is it a side effect of the meds, or is it him being a baby? I don’t think I’m ever going to stop worrying.

We got our baby shoot photos back. We were treated as part of the charity Remember My Baby – I felt a bit odd, as usually they do rememberance photography for parents who have lost their child, while our baby was very very much alive. It was part of our NICU leaving package, and as I felt robbed of those first precious weeks (I had contacted a few photographers about a newborn shoot before I went into labour) I didn’t feel I could say no. 

Cheryl was amazing. We’d only been a few days at home and she put us at ease. She captured so much of our new day-to-day, it was really amazing.