Trying his best to stay awake even though he is soooo tired. Monday night I picked up his antifungals from the pharmacy about noon so he got his dose late. I gave him his next dose in the middle of the night cause that's 12 hours later, and his nurse was coming at noonish the next day to draw a blood level of how much voriconazole (antifungal) he had in his system. That blood level needed to be drawn about 12 hours after his dose...so that all worked out perfect...except that he woke up and couldn't go back to sleep for the rest of the night. I put him in our bed so I could get some sleep...didn't happen...and I finally took him upstairs about 6am and turned on the tv for him. Thursday night (picture is thurs) he told me all about how there was a ghost in our room that night(monday), told me all about where the ghost was and what he did, and how the cups on the windowsill were moving around like star wars and he laid in bed for a couple of hours thinking about it before he finally fell asleep. Not sure what that was all about, hallucinations and change in vision is one of the rare side effects of voriconazole, but since that seems to be an isolated incident...we'll never know what was up.
Thursday night is also significant because there was a giant fire in our home town, 66 homes were damaged, my sister's house is at the tippy top of Johnny Creek so a bunch of people were up there trying to clear brush around their home and putting sprinklers on the roof in case the fire spread that far.
The view of the fire from their house...luckily the wind died down and the fire stopped spreading significantly so it never reached their house. We are sad for the people who did lose their homes. There were also bulldozers up there creating a fire break. We live at the other end of town so although we could see the smoke, it wasn't blowing our direction. We went to bed with the windows open to let in some cool air. The wind must have changed in the night cause at about 2am we suddenly had a very strong smoke smell in our house and Tyson woke up with the worst croupy cough I've ever heard. He coughed and cried for quite a while. We frantically shut all of the windows and turned on the A/C and I turned on a hot shower to get some moisture in the air. He calmed down enough to sleep but continued the croup sounding cough the rest of the night. Friday he still had a cough, but it wasn't croupy anymore, and we called to see if he needed to see someone because of the stuff already on his lungs, we weren't sure if his reaction to the smoke was something we needed to be concerned about. The doc wasn't concerned and said it should clear up when the smoke does...which it did.
He threw up Friday morning (his antifungals make him do that occasionally) but it was in the iffy timeframe for whether or not I needed to redose him or if his body had already absorbed his first dose...so I didn't redose. He had a fun day the rest of the day, like any other kid. He played slip-n-slide at a cousin's house, had cotton candy, and rode the scooter down the driveway several times at Grandma's house while dad helped build a landscape wall.
He also watched his brother guzzle a soda and let out a giant burp. He thought that was fantastic and spent the rest of the evening drinking from a 'burpcan' and trying to burp.
Still having very crabby mornings...we are having a steroidesque morning today, he asked for frosted flakes, I said we were out and he's been crying ever since (going on 45 minutes). He's sitting under the piano bench right now crying and yelling 'I don't want mommy'. I'm ignoring him of course, we don't pander to temper tantrums around here, I told him to let me know when he decided what other kind of cereal he wants and left it at that. He isn't normally the temper-tantrum type guy, so I am guessing that he must still feel the effects of the tiny chemo pill he gets the night before in the morning or maybe the voriconazole, who knows? he sleeps 12 hours so it's not that, maybe he's just being a 4 year old...he usually wakes up crying and fussy and then after a while perks up and is a normal happy kid the rest of the day. We like normal and happy. : )
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