Got a pretty good idea today what we're up against now that Willem's off the ventilator and they've decreased his dopey meds. Willem is being a little anger ball, which is to be expected, and being a little aggressive. I was pretty sure that he wanted to rip my face off this morning while I was trying to get him to cooperate with the nurse tech.
Doctor said that he'd like to get one of the tubes out that's running through his nose and down his throat and into his stomach but he has to see that Willem is willing to start swallowing in lieu of drooling. I asked Willem if he wanted a popsicle and he nodded that he did. I gave him a really tiny bit and he closed his eyes and smiled big. At least I think it was a smile -- tough to say. He didn't swallow it and it eventually just ran out the side of his mouth. Frustrating.
Some mental and physical actions made me want to check Willem's mental status so I asked him, among other things, if he knew who I was and, after staring at me for a while, shook his head. That had the emotional effect of picking me up off the ground and throwing me against the wall. It stung a little.
Shortly thereafter stubborn boy and stubborn daddy got in to somewhat of a pissing match over him needing to swallow and, although I probably shouldn't have, I asked him if he wanted daddy to leave and he gave two thumbs up (thank you Leigh, by the way, that thumbs up/thumbs down stuff is working great; I think he's got it) and nodded. So... packed up my stuff and left. Maybe he just needs some alone time. Guess I can't blame him.
Thank you Leigh for getting me out of the hospital today and buying me breakfast. I needed the distraction more than I had realized.
Benefit Spaghetti Dinner for Willem:
https://www.facebook.com/event.php?eid=211804885543234
Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.
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