Sometimes I feel like a nut

Poooor nurses.  That’s all I can say.  That and poooor doctors dealing with me.  I am always questioning, reading, inquiring, well….stonewalling and then sometimes at 3 am without sleep and without basis, saying things like “uh….I have to say no to cephalexin” and then not remember why.  They gave her something different which is stronger but she’s not reacting to it so that’s a good thing.  I waited till 4 am to see if she rashed out or something. 

Her fever (ya I know…I said she didn’t have one) spiked up to 38.1 and then it came down a few hours later.  Just like it always does.  And they respond just like they always do.  Tylenol and antibiotics.  I know they can’t take chances but I feel so strongly that this is just Ruby’s pattern and always seems to be the same.  Give chemo drug, wait 2 days, fever spikes, wait 5 hours, fever gone.  Rinse and repeat.  But a protocol is a protocol.  Right?  And they don’t deviate from that on the just in case.  I know I should feel grateful but I’m more of the wait and see variety of mom than the quick medicine bottle grabber.  I remember when antibiotics went out of vogue, the quick response treatment has created a plethora of your most divinely ninja bacteria jumping from one nostril to another around the globe.  So when I hope for a holdback of resistance creating antibiotics I do feel a small sense of “just wait it out for a few hours.”

Ruby’s counts are in the can so to speak.  She is officially neutropenic.  This is a fancy word (hellllllo Nancy) for having no functioning white blood cells and no ability to fight infection.  This is a fancy prereq for isolation.  Good thing I brought the bari ukulele.  I can torment her back to health for the next 3 weeks instead of the usual 1.  This also means if you have some plan to visit you’ll be masking up.

Tom came by last night.  His visits are always so fascinating for me.  It’s more like a teacher to student experience for me.  Oh ya, because this is all about me.  Just jokin.  I have my perspective.  I am learning a ton from him though.  At about 4 am (he was here in the early evening for a bit) I thought of a white crane – the kind with the red mark on his face – standing near the bed and guarding it.  Then I knew I could go to sleep.

Ruby is so sweet.  Even if she’s shaking like a leaf and feeling like the worst sort of special hell, she still turns to me so politely and says “mama, I know you want to make sure I’m cleaned up but I really really just need to go to bed” and then she walks back to bed herself.  Shaking and barely able to stand.  I love this hilarious sprite.

It’s only day 3 and already she’s sooooo sick of me saying the moment she wakes up “do you need to go pee?” 

So today is the echocardiogram.  Her blood pressure is stable and heart rate is sitting in that sweet spot of normal.  This will hopefully give us a normal and healthy heart reading.  The sooner we are done this course of treatment, the sooner we can leave the hospital and the sooner I can get her drinking carrot juice.  Ha!  ok, that was a wishful thought.  I have a feeling she will have an NG tube by the end of the day.  Can I just say again how amazing those Blendtec folks are?  They sent us a blender we can use to liquify most anything.  It’s the best one they had and they sent it to us for FREE.  Yup.  You heard right.  Free.  Blows me away.  Now I can just get Brian to roast a chunk of moose and make Ruby’s favorite mashed potatoes and beans along with some carrots and maybe a healthy dose of kale and whoosh, it’s line feed.  Blendtec, you have a special hug from me today.  The whole company.  Fortunately a cyber hug is customizable in size. 



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