I mostly write about my older daughter–the one with autism–in this blog. But younger daughter has her problems too, and last week they became acute. She had been feeling off for about two months, with a persistent cough and fatigue. But then about ten days ago she called up and asked me to take her to the E.R. She was extremely pale and her tongue had a green (!) tinge. I got her there, they took one look and started the process of admitting her to the hospital. She was extremely anemic, and had a startling low number of platelets in her blood. Two days later, she was transferred to the Intensive Care Unit at Barnes Jewish Hospital in St. Louis (where, I have to say, they have been absolutely fantastic with her care).
The immediate problem was an extremely rare (2 cases in every million people–lucky us!) blood disorder called Atypical Hemolytic Uremic Syndrome, in which the immune system attacks the blood. She had to have repeated transfusions of blood and platelets, as well as an extremely scary drug that is the best treatment for AHUS, but increases the risk of contracting Meningitis by 1,000%.
After six days of intensive testing, during which she got sicker and sicker, they determined that the underlying cause was Lupus. Once they started treatment for that, there was an immediate improvement. She didn’t have to have lots of pain medicine and she could eat without vomiting. Last night she was visited in the ICU by a therapy dog. She was able to get out of bed and hug him, which made her (and us) burst into tears.
In short, the chaos continues here in the Midwest. But what a relief to have her feeling better.