Hey guess what…we have no idea what triggered any of this. Shocker, right? I know. How very unique of a situation for Miss Riley to be in (insert eyeroll emoji here). So far every culture has come back clear, every viral panel negative…her vitals have remained stable and fevers at bay since we bombed her little body with steroids. Her chest X-Rays show some “haziness” in her lungs…maybe pneumonia which shes been getting prophylactic treatment for but for added kicks we started a full course. Maybe some random unknown virus she picked up despite our precautions? Maybe just more manifestation of GVHD? Who knows. If it’s the latter that’s more of a chronic issue and so will show itself more over time…it’s already been in the plan to do a follow up CT scan in the coming months to peek in on her lung progression so that plan remains.
She isn’t eating or drinking a ton but has been on round the clock fluids so hopefully once those are stopped her appetite and thirst will return. She slept the majority of the day yesterday…maybe she needed the rest or maybe much like a long flight she knows time just passes quicker if you sleep through a good portion of the hours. Either way she is stable enough that whatever this is we can continue working through at home. We of course want to minimize her exposure to anything else so the less time in these halls the better. We’ll be headed home today with some adjustments to meds, another heavy dose of perspective, heaps of caution and a few more gray hairs.
Maybe this admission needed to happen to show us that it’s possible for her to get sick but not THAT sick…and of course by THAT sick I’m not trying to belittle her past couple of days just tout the fact that she’s still walking and life support didn’t get involved. Tiny victories, right? She’s come a very long way in a very short time…we still don’t know where the hell we are going but are headed up, down and all around together. When we were last discharged it was without all the answers but I have even more confidence now in the valuable knowledge we gained. I feel less vulnerable about the unknown and more confident in the bits that we do know. We’ll be walking out of here today with no answers but Riley in tow and that is all that matters. That 6 week roller coaster provided us with precious insight to this complicated little person that kept us steps ahead this go around. We’ve learned to be stupidly cautious, to trust our instincts more than ever and to never underestimate the quickness in which her little body can turn on itself. There are few things more rewarding than getting to apply those “lesson learned” tactics which were once hindsight to a current situation and watch it unfold in success. If this was Riley’s way of testing her parents, her UCSF team and her overall support system…we passed. She passed.
Clearly the next few days will be very telling…she could take a turn that ends us right back up here or she could just get back to skipping through the house as if none of it was real. Stay tuned and once again…all that love y’all send is more appreciated than anyone will ever know. xoxo
Go Riley Go.