The good news is Maddie seems to show no indication of having PTLD.
Unfortunately, we still have no idea why she continues to have fevers.
But we’re taking the good news of no PTLD, no serious infection or disease, and no further bleeding and cautiously celebrating.
All of the major, scary viruses and diseases have been ruled out from the blood, urine, and fecal cultures they’ve done. Her CT scan today showed healthy bowels, unaffected by the recent interventions, and no abnormal lymph nodes anywhere in her torso. Such a relief.
But despite all this clinical improvement, today was rough for Maddie. Remember how little pain she’d experienced over the week? It all caught up with her today.
Probably because of the poking and prodding from the angiogram, or the vaso-restrictive IV meds she’s been receiving to limit blood flow to her digestive tract, or the ulcers, or a combination of them all, her poor, sluggish bowels were spent. As such, most of the day she curled up into fetal position like you see pictured above. All you can do with stomach pain and nausea is keep a hot pad on your belly and veg out watching “Sophia the First.”
Hopefully, now that all of the testing is finished and they’ve scaled back on many of the medications, her gut can begin to return to normal. The doctors say it could take days or even weeks for all of the old blood to completely clear from her intestines but things should start looking up for her now.
There’s more to the story about her rare anatomy and her bowels but I’ll leave that for another post. Let’s just focus on the good today.
And we’ll tackle the mysterious fevers tomorrow.
Thank you, everyone, for your kind, kind words. Your messages of encouragement, love, and support mean so much to us. We’ve felt your prayers lift our hearts.