September 7th Update

Annie's white blood count has risen again, now to 25,000! That's an increase of about 5,000 in just 24 hours. Her last spike was only 3,000 over 48 hours. Her hemoglobin has dropped again but not quite as significantly. They checked her urine again and everything looked great there, so that infection has cleared up nicely. So everyone is still stumped as to what could be causing such a high white blood count. Annie's heart rate has been coming down and is lower than it used to be, but still not back to normal.

With the dramatic increase in white blood cells, and no clues as to the cause, the infectious disease team was brought in today. They said that based on the different types of white blood cells that are all elevated, they don't suspect that she has any kind of infectious disease process going on. And based on past lab results, they don't believe she even had pyelonephritis--which is in line with what the urologist and radiologist said as well.

The ID team believes that Annie needs to get back onto her regular feeds and once her GI tract is working normally again, they suspect her white blood count to return to normal. They weren't sure how to explain her sudden and dramatic drop in hemoglobin, so they are referring us to the Hematology/Oncology team, which will hopefully be in to see us tomorrow and get us some answers.

So for now, we are continuing to wean Annie onto her feedings. She is at the full required rate of 60cc/hr, but is only on quarter-strength formula. Tomorrow we will transition to half-strength formula, and maybe by Monday, try full-strength if all goes well between now and then.  Everything is still running through the J-tube, so then once Annie is up to 60cc/hr of full-strength formula, we can work to transition back to the G-tube depending on her tolerance. She is still on TPN through her PICC line at a decreased rate, but that will be discontinued tonight. We'll keep the PICC line in place though, until Annie is back to her regular feeds, just in case she takes a step backwards and ends up needing it again.

Tonight we all joined Annie in the hospital for a pizza dinner together--the first meal we've had together as a family in two weeks! Lexie played some video games for Annie and we all had a pretty good time together. Annie has been in good spirits with no more bouts of pain--They suspect her pain from the last couple days has been cramping or gas from her GI tract getting up and running again. Annie had a good night last night and has been pretty happy today watching some fun movies.