Morning Update, September 6th

It's been an incredibly frustrating morning. Last night was really rough. Annie was screaming and writhing in pain for two hours. She received tylenol but I don't think it did anything. She eventually threw up and fell asleep. She did the same thing the night before. Annie woke up again at 4:30 this morning with agitation. It didn't escalate into quite what is was last night, but she's clearly having some intense pain. We just don't know the cause.

We've suspected all along that Annie has something else going on other than the UTI and pyelonephritis. Even her urologist wrote in his report that her symptoms are atypical for pyelonephritis, and the radiologist told me her imaging shows only a slight possible pyelonephritis. And today Annie's lab values are further indicating that. Her white blood count has gone up yet again, to over 20,000, and her hematocrit and hemoglobin have dropped significantly, indicating that she has a possible bleed somewhere. Her heart rate is also still very elevated, further indicating that there is a problem her body is reacting to. She is on day 9 of IV antibiotics for the pyelonephritis, so she should not be having any symptoms from that anymore.We know the bacteria from the urine culture are susceptible to the antibiotic she is on, so that should be resolved.

We are getting a bit frustrated to say the least, but hopefully today we can get some more testing done and finally get a real diagnosis. This has been the most difficult hospital stay in regards to advocating for our child. Continued prayers are very much appreciated! I hope to be able to finally share a definitive diagnosis with you later today!

On a more positive note, the adjustment to Annie's PICC line yesterday seems to have been successful! We were able to draw labs beautifully this morning! What a relief!