Kai will be taken off to surgery in an hour or so. I’m amazed that such a little body can go through three neuro surgeries in less than two weeks. The surgeries themselves don’t seem to bother him all that much, either bc he is not aware they are happening or bc it is masked by the general discomfort that he is feeling.
Not really sure what to write but wanted to let you know that the surgery is soon. It’s supposedly relatively routine and nowhere near as major as the original tumor resection.
Last night was rough. Kai started having shallow breathing so he couldn’t have any pain meds. I couldn’t even bring myself to stand at his bedside. Aki stayed with him and sat in his bed all night – comforting him and reading comments that you all have left on this site. That’s beautiful.
For whatever reason Kai had been clinging onto a granola bar that Sheerin had given him last Sunday before coming to the ER. He has not let that thing go. He hadn’t eaten anything in 2 days, choosing to hold onto his food rather than eat it. Last night, out of the blue, we heard the wrapper start crinkling. He had started digging into his snack! Why he chose to hold on to that bar for so long and why he decided at that moment to finally take a bite I guess we can’t know. It seems like Kai, though – stubbornness to keep things ordered knowing that he fully intended to take advantage when the right time came. This simple act cracked me up and made me smile. Of course he wouldn’t let that bar go, he was going to eat it…eventually!
We are hoping and praying that this surgery will be able to alleviate the fluid build up in Kai’s head, better than the external drain anyway. No matter what, it’s a necessary step to getting back home and recovering there rather than in the hospital.
At home Kai can get back to teaching his little sister at an early age how to navigate the maze of videos on YouTube, identifying those few videos that he can watch on an endless loop. 🙂
We love you, Buddy!