We still didn’t know what was wrong and Kai was going into that awful apnea stage, where his lactates were high, meaning he couldn’t expel his waste gas/CO2 levels. He was upgraded from regular o2 to a CPAP machine, which forces the air into your system, rather than waiting for you to take a breath. That wasn’t working so well, so they intubated, and Kai was put on a ventilator to breathe for him.
We were so scared, and we felt so helpless. We blindly trusted his team to do what is best for him, but it was heartbreaking. We know now it was because he had toxic levels of glycine in his system. And that this is the window where many, many babies with NKH don’t survive. NKH is just the most horrific disorder, it is so wildly devastating. I think I cried as much on this day as I did today, if not more. My heart hurt then, in fear of my baby dying. My heart hurts today, now that I know what the horror is like (I was right to fear it – this anguish is all consuming and excruciating, never ending).
Still, on this day eight years ago, I got to hold him twice in a single day. I got to love on him, and whisper to him all the many ways I loved him, and I got to smell his little baby smell and nuzzle his beautiful cheeks. Today my arms are empty, and I miss him so much it physically hurts.
Kai would have been eight this week. It still seems incomprehensible that he is not here anymore. If you’d like to help celebrate his birthday, we’re raising donations into his memorial fund, with a long term goal that one day, children born with NKH won’t need to experience this.
Please donate, if you can: https://ift.tt/JWwpm8S
#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #teamMikaere #cure4nkh #nkhResearch #fundraising from Instagram: https://instagr.am/p/DBGUehlvEJk/
