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What we’re up to… November 10, 2024 at 10:00AM

By 10th November 2024 No Comments

On this day, 10.11.2016. I do remember this day. Our boy got to leave the hospital for the first time, not to come home, but across the city to another hospital – a tertiary level children’s hospital. It felt like big deal (big enough that they sent us in an ambulance, with two nurses) but actually, he was fine.

Here is what I took away from our metabolic consult – there is no cure, or treatment that he wasn’t already on. NKH symptoms were coming, and essentially, he could have weeks or years, but likely weeks. That’s it. I was frustrated with our consultant… I shouldn’t have been, he was lovely but also restricted by the trust he works for on what he can and can’t say, particularly in regards to research and hope. Since then we’ve released the NKH Info pack, which does say the things he couldn’t.

When we got back, in that awful witching hour where nothing helps (although, I think it might have been the pain from sodium benzoate, but I couldn’t have known that at the time)… Kai’s nurse suggested he might be bored. Usually babies have exposed to the world and have all sorts of new sensory input going on, but Kai didn’t. I felt bad that he had been deprived of new experiences, so we got him a mobile. Anyway.

This day was the day I first started advocating for my boy. If he only had weeks, I didn’t want to spend them in NICU. I wanted time with him, I wanted to stop being separated from him at night, and I wanted to make memories at home.

When I think on it now, I think that at the end I should have advocated more, but I didn’t have the capacity. I keep saying it, but I feel so fragile right now. Holding things together to look and sound and act like it’s all fine, but it’s not. I spend all day holding back my thoughts so I can function. But in those quiet moments? I relive the months and weeks and days and hours and minutes before he died. And I feel like he deserved more. I hate that I fell short for him.

#nonketoticHyperglycinemia #glycineencephalopathy #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DCL8zAIiDFu/

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