We are home again (for now). Our doctor told us today that he’s treated many, many cases of HSP, but never seen one like this (that’s my girl!). They want to change her meds, but the stronger immunosuppressant might cause even more GI side effects. He also mentioned Cytoxan which they use in cancer treatment (she does NOT have cancer) but the side effects of that are awful, so that’s really a last resort. I asked him if we were overreacting because frankly this all feels so surreal now, he said absolutely not. The lining of her bowel wall is so thick and inflamed on the ultrasounds that he said we are not at all overreacting. They just don’t know how to arrest this thing until it goes away for good.
That’s all for now. Once again, it will feel good for all of us to be in our own beds.