On five seizure free days

By 7th February 2017 No Comments

We were doing so good with the seizures. I’m sick. Kai is sick. My mum who is visiting is sick. With one of those head colds, where it sits in your sinuses and makes you feel horrid. Sam picked it up while we were out at the hospital last week and now we all have it.

This wouldn’t be such a bad thing if Kai processed illness like any other baby, with misery and building an immune system. Instead he has seizures. Considering he’s on so many anti epileptics this is crazy. They’re also presenting in a new way, with much more screaming and back arching.

Oh, baby. I’m gutted. He was doing so well, and we were looking at weaning some of the medications. Now he’s got a fever in the 39+ range (usual baby high is 37.1) and not holding down his feeds (extreme reflux) and he’s so so so uncomfortable. And the seizures. Oh my days the seizures. It’s heartbreaking, I hate it. I wonder if I could have avoided it with more hand washing or less cuddles or whatever. I think I’ll forever be second guessing myself.

Now I understand why people always say ‘don’t come into work if you’re sick.’ If someone at Sam’s work goes in sick rather than taking sick leave, and Kai gets it from Sam? Worst case scenario – we’re back in intensive care worrying if Kai will survive. That’s a likely scenario too, by the way. There’s a boy here on end of life care because of a chest infection that any healthy adult could shake off.

But Kai isn’t a healthy child, he’s vulnerable to all the bugs and colds, like all the special needs kids here. As an example, we got his eight week immunisations, and then the next day we were in hospital. Immunisations aren’t meant to hospitalise babies. Colds aren’t meant to devastate them.

It’s heartbreaking to watch, and I feel all the things. We were doing so well little guy! Please get better soon.


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