We are just kind of hanging out today.
Knock on wood, things are going pretty well. No chemo for Anna Sun-Tues so we are taking advantage of no dr. visits!
Today Ella is not feeling well and is at home as well - they are kept separate, not sure to what benefit...I'm pretty sure all the hugging and smooching they do before Ella was sick gives Anna just as many germs - just now they are more visible. Sad Ella's missing her last math club, I think in addition to not feeling well, she's just really tired and worn out. It makes sense Sam and I are tired and worn out too. She goes to school all day, has playdates pretty much every afternoon, comes home for dinner and homework and bed. Not at all an ideal situation for a kid that cherishes her alone time. I hate that she's missing school but I'd rather her be home with us, not gathering more germs to bring home to her sister and possibly make both of them feel more sick.
Tomorrow is to be a long clinic day, I'm hoping not too terribly long. Anna is scheduled for her IT (intrathecal(spinal))chemo at 12:55 and Anesthesia is horribly late. Every.Single.Time. I don't think we have ever had an anesthesia appointment that started within 30 minutes of being scheduled. She is scheduled at 12:55 so hopefully we'll be in the after lunch lull and won't be too terribly late. She is unable to eat past 3:30 am but we're going to move that a bit - the cut off time for feeds is procedures before or after 1pm - I think it is close enough. Before 1pm, cut off is 3:30 am, after 1pm cut off is 7 am. Just watch, tomorrow they will have an opening or cancellation early and want to do her at 11 am or some earlier time and she won't be able. She's scheduled to get her Cytarabine (Ara-C) at 1:30 so I hope they aren't running to late witht he anesthesia or that will also be pushed and while the chemo itself is pretty quick and easy the waiting for fluids is what takes a significant length of time. The days when she is just getting Ara-C we are only there for about two hours.
Crossing fingers that her counts are still up so she won't need any transfusions tomorrow or that just throws everything out the window!
OH! I know I've written before about being afraid of messing up the meds or the timing or something...Last night I gave Anna her pain meds an hour early! Yikes! She was complaining of pain and she usually does that right at the 4 hour mark - except she was complaining at the 3-hour mark and figured the math wrong and gave it to her early! Stink! Won't be making that mistake again. Then, this morning, I was cleaning the kitchen and realized it is Tuesday - 10 am! Yikes! Anna needs ot have one of her antibiotics this morning. It is only given on Monday and Tuesday and she had her Monday doses, I just forgot about the Tuesday morning dose until later in the morning. I told Sam I need one of those pill boxes for her.
I think we are on morning five or six of Anna waking up and throwing up. We are going to speak with the dr. about this b/c Anna really doesn't want to take more medications. Even though they are in her feeding tube and she doesn't have to swallow them, she just doesn't want to take them. The 2nd anti-nausea is pretty strong with some really bad possible side effects - but if she is throwing up every day? What Sam and I want to know is it okay for her to throw up if she's okay with it - or should the goal be to not throw up at all? If she were eating more I'd be more inclined to just let her - she doesn't really seem bothered and it is pretty common to her now. She leans over, throws up, gets a drink and goes back to playing or whatever it was she was doing. Except for the morning - that is bothersome. We are going to start setting our alarm to give her anti-nausea meds overnight. Unfortunately, however, she isn't really eating, except salt ;), and her feeds are basically her nutrition.
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