Disclaimer: If you haven't read the blog below yet, read that one first. It will update you on yesterday and what lead us to where we are today, which is back in the hospital. I will probably be doing smaller updates, in the next few days with the amount of information coming in, so just make sure to always scroll down to make sure you read them in order.
So Luke woke up with a fever of 103 this morning at 4 am. We tried to get it down, but it was being stubborn at first and after an hour was only down to 102. Per instructions from the clinic we packed our cute little butts up and headed North around 6. He has been eating (graham crackers, so I'm not really sure if this counts) and drinking and laughing and singing all morning, but his blood work did look good yesterday and a fever isn't a good sign when you have 'no' white blood cells. So we got here and were admitted. They thought for a second about transferring us to hematology, but we are staying with neurology since the nurses on this floor love him and know him. We have blood cultures pulled, which will take 36-48 hours to develop, and some other labs. His port is accessed and we have started antibiotics. Poor guy was woken up to a catheter... Which I have decided is the WORST way to be woken up in any "Would You Rather" game. His labs actually just got in and his white blood count is still extremely low as well as his hemoglobin. The only stat that stuck with me was that his SEGs were 1, so if you are grasping at optimism, that is up from zero. Basically, things that are supposed to be low are high and things that are supposed to be high are low. We aren't sure now if things are out of whack because of the Afinitor throwing everything off or it's because he is fighting an infection. So... how long we going to be here. After lots of, "well first we have to see____" and "then we will watch____", the answer I walk away with is a week-ish. Will update again after we meet with hematologists.
Luke's seizures- 8 since 5:30 this morning. Most notably 3 in the past hour.
No witty closing now I am afraid. Just imagine it as one of those weird indi movies that just end and you are like... oh, ok. We are done here? Yup, for now.
Mother of two amazing little boys, one who just happens to be a TS warrior.