Well we are settled in now to our new room…it’s weird not being so secluded way in the back, weird but kind of nice. It’s a nice reminder that Riley’s is that much closer to the door…32 steps closer to be exact. Yesterday while carrying some bags out to the car I think it hit Kate and I both…whoa…one day we’ll actually move out of this place…gahhh!!!! 🙂 I can’t wait but, well…yes I can…I can wait, I want to wait, I don’t want to rush her recovery, her chance, her life…however long it takes I’m up for it.
The past few days Riley has not been feeling all that great…I know I know it’s hard to tell that through the intoxicating giggly videos on Facebook but she has the ability to insert happiness into any situation as we all know. She hasn’t been eating much during the day and has had a bad case of the runs which always leads to a stool study being ordered (yup they study my kids crap). They basically run a panel of tests for different infections and place our room on additional precautions meaning gowns, gloves and face masks for all who enter. Luckiliy the fact that my role in this play is “Mom” I get to skip the over the top attire, phew. The results for those studies came back yesterday and she was clear of any of the infections they run for so that is a good sign. We are still waiting on respiratory panel results that they ordered courtesy of a big ol snotty sneeze she sprayed out yesterday (you’re welcome for the visual). Fingers crossed that she is infection free there as well. Alllllso…she developed a rash on Tuesday a couple of hours post blood transfusion. Man you mix rash, vomiting, diarea, lack of appetite and weight loss and they get movin’ around here. I think Riley heard the word discharge and was like “no, no folks…I’m going to throw you for a loop and make things interesting.” Her rash pretty quickly cleared up leading them to believe that it was a mild reaction to the blood products she was given which is very common. She’s had more transfusions than I can count since we’ve been here through in the past since she was so rashy all the time we probably never noticed any side affects. Solution for that will just be to pre-med her with Benadryl should she require an additional transfusion. Easy fix.
The things that we are most concerned about now post transplant are infection and graft vs. host disease. We REALLY want to avoid both of those little buggers. The symptoms that she has been having could just be nothing or could be warning signs of infection or GVHD so they are keeping an extra close eye on her. She only held down about 3 ounces of formula yesterday between 5 a.m. and 4 p.m., she either wasn’t interested in eating or decided it looked better on our clothes than in her belly all day long. Around 4:30 they decided to start her on IV fluids to ward off dehydration so she’s back to being plugged in but that’s ok, she’s just as cute with cords…just a little harder to hold 🙂 I had a long talk with Dr. Shimano yesterday (the attending BMT doc this week) and even with all of the curveballs she’s throwing our way she they are still happy with the progress in her counts. She has a whopping 114 T-Cells, normal is in the high hundreds so she still has a ways to go but it’s a damn fine start. Still waiting for the function test results, those 114 cells don’t do us any good if they aren’t working so again…fingers crossed. Dr. Shimano (and the others) want to see increased numbers, function in the cells, CMV levels to be at zero and for all of these pesky symptoms she’s been showing to stop. We are probably looking at a minimum of 2-3 more weeks here before inching our way any closer to the door.
I’m heading home today to spend a couple of days with Presley…my Mom is here now so she’ll probably snuggle all the icky feelings right out of little Riley. Send lots of positive vibes our way and hope that our tiny trooper gets to feeling better soon. 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. Rileyjanebrown@gmail.com
Thank you, thank you, thank you
Amazon Wish List:
You can also follow Riley’s journey on Facebook: