Riley Update

Time moves so strangely here…half the time I have no clue what day it is and don’t even get me started on what the bloody time change has done to my brain. As if I wasn’t confused enough…sheesh. For the first time I had to go back and re-read my last update because I couldn’t for the life of me remember the last thing I wrote about…whoops. So…after that little refresher here is the lastest on Riley. The results for her respiratory panel came back on Saturday and she tested positive for the rhinovirus…sounds like a big bad beast because well the word “rhino” preceeds virus but it really is just the fancy term for the common cold. Granted the “common cold” for an immune compromised baby is a bit more nerve wrecking but there really isn’t any treatment…it’s just kind of a wait it out kinda thing. When Presley has a runny nose my biggest worry is her using her hand to wipe the snot straight up her forehead and into her hair making her curls stand at attention…with Riley it’s a little more involved. They are keeping a close eye just to make sure that they catch anything else going on and that this virus passes through her quickly. Saturday they also sent out an additional stool sample to get a broader virus panel in hopes that they can figure out the cause of her diarea, results on that shouldn’t be back until later in the week. Yesterday I was thinking we were at the end of our road with runny diapers but this morning she had quite the explosion that let me know right away we were NOT done. Shit. Literally. So that is where we are in terms of virus/infection/reasons for feeling crummy. As far as counts. Still no results back on the function test though from what I’ve gathered they don’t expect to see function for a couple of weeks, it’s one of those things that just takes time. Labs were drawn yesterday morning and the biggest change was her ANC counts dropped pretty drastically this week…they went from 2300 down to 890. They decided to give her a dose of the GCSF (the same med I got to boost cell production pre-harvest) in hopes that it will help bounce those counts back up. As you remember from my whining that medication causes some pretty serious discomfort so yesterday evening she took a break from her usually smiley demeanor and wore a frown from about 5 o’clock on. She decided she was going to just sleep through it…good plan. She’d open her eyes every 4 hours or so and give me a “put a bottle in my mouth and don’t you dare touch that light switch look” guzzle it down and be right back out. They drew labs again about 4 a.m. but I was so out of it I didn’t even inquire as to why but I assume that it was to check her ANC, docs should be by for rounds by 1ish and I will know more then. She woke up happy this morning, sounds like a little pig from the congestion and quite frankly smells like one too thanks to her bowel issues but hopefully all farm animal similarities will be resolving themselves soon.


Hoping that she has a happy “feel-good” day and that her counts get back to an uphill trend. Prayers, positive thoughts, appendage crossing…whatever it is you do to send good vibes please do. xoxo

For those who would like to donate or help in any way please follow the links below…as always email me with any questions.

Thank you, thank you, thank you

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