Thursday, January 15, 2009


So we are trying to find a routine again. I realize that isn't going to happen, but sometimes you gotta say- this is going to be the routine, for today.

Lily has been waking up vomiting between 4 and 5 am when her zofran wears off. We tried to adjust her zofran schedule a little yesterday so her last dose was when we went to bed- but that still only buys you 6 hours. It is also problematic, because the mitotane makes her feel so yucky that the two really need to be paired close together. Since Phil had to get up at 0445 to go play war, we went to bed around 10 and sure enough I got the wake up call at 4. There wasn't any beeping last night- but every time I hear a cough I have to get up and check it out. Since Kiera and Phillip both have coughs- there was quite a bit of checking going on. The silly IV machine is ancient and likes to beep- a lot. Phil actually called the company yesterday and started asking for something that was born after 1980, but made little progress. Fortunately the food pump is newer and doesn't like to beep unless there is a problem. I guess the bright side is that Lily is doing well and the IV fluids should be discontinued today. The button is working well. I just have to be careful to stagger the meds in a good order- anti nausea first, mitotane last. Since the mitotane requires so much milk and a good flushing, I don't want to overload her little tummy. Yesterday I put everything too close together and was rewarded with 2 puke sessions. It's hard to say if she would or wouldn't have thrown up anyway, but having extra stuff in her tummy didn't help.

This morning she allowed Bella to help clean around the button. I was impressed by both of them. In a little bit we are off to clinic, which should be fairly uneventful. I say that realizing I just jinxed myself, but it's too late to take it back.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)