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The Never-Ending Story.

Ok as an aside – GREAT movie. i highly recommend it. We wore out the Betamax version of it at our local movie rental place when I was a kid. “ATREYUUUUUU!!!!!!”  Ok random stroll down memory lane over. End scene.

For those of you who stay up with the daily drama on Facebook, you will remember how I posted yesterday about the two phone calls we received from the team at the hospital AFTER they kicked us out of there that Kendall’s culture(s?) were growing a very strange bug, and they needed to know if she seemed sicker so they could have her come back in to start new meds for the new strange bug. And in typical Kendall fashion, she wasn’t SICK, but she also just wasn’t totally BETTER. She did this same thing last time they sent us home too, and we all know how that turned out (needing to be re-admitted three days later for another week of tweaking and a transfusion). I really could not say that I felt she was one way or the other. Lots of stupid little stuff that was “off” still – but much of the same stupid stuff that I dismissed the few days before she got sick with the yeast sepsis. So what do I know?!?!?!?

The plan at that time was to pull more cultures with our regular Monday bloodwork and see which way they were going (either growing more of the same, necessitating treatment or at least evaluation back up at Hotel CHW), or negative, meaning it was just a very very very strange contaminant, hopefully from the lab tech or in the lab itself (although neither of those options gives me warm fuzzies either! I know it happens in hospitals but come on!)

Annnnndddd we still don’t know much more at this point, late Tuesday nite! It generally takes about 24 hours for most bugs to grow out (of course the quinners likes to grow hers out in prompt timing, like 7 hours) – so I am HOPING that no news is good news. The report we got this morning just said “pending” – which is all kinds of super unhelpful!!! Pending what??? It drives me insane, this whole waiting for answers thing. I mean, I just cannot fathom that a kid who is acting mostly “ok” could be infected with the nasty bug they are telling me she has. However, no one could fathom last week how she was still sitting up and breathing on her own with yeast eating through her blood on a CBC smear either…

She also managed to jump JUST above the level i swore I’d call our nurse back at from Special Needs with her temp this afternoon, and spent about 3 hours having to sit on the couch in the darkened TV room watching hot dog nemo (a new fun crazy-making mashup whereby you have to GUESS if she really wants mickey mouse or nemo on and heaven help you if you pick wrong!!!!!) in order to cool off/get her sats back into the 90’s/heartrate out of the 160’s. I am HOPING that all that craziness was courtesy of the 15 minutes she spent in the shade on our front porch after her nap in the first blast of summer we’ve had around here! (It went from 60’s last week to 85 today!!!)

So all of that to say we’re still truckin’ over here! SHE is doing great – she has no idea she is “supposed to be” either super sick or super healthy – she just is kendall, in all her confusing glory! The never ending story of her (and our) life! We will keep a close eye on her still cause some of her bloodwork (labs) is taking definite downward trends from where it was even on discharge day last week. Hoping its all just “catchup” from a crazy week for her little body last week, but  a little bit worried that things are oddly similar to how it went after her last sickness earlier in the spring.

At least the weather today was a very nice and welcome break from the cold blah-ness of the past few months – hoping it means summer is around the corner!!! Cannot wait to get rid of this cough/sinusy/cold crap that I and Kaylen have been dealing with for a few weeks now!

Ok sorry this is a rather disjointed update and really has a whole lot of non-information in it – welcome to our lives the last few days!!! Thank you as always to those of you who are coming around us and supporting us in ways that I cannot even begin to list or tell you how much it means to us! The meals are an amazing blessing to us, and the snacks for the big girls are LIFESAVERS! We love you all – thanks for checking on us!

 

terra