June 12th and 13th 2012

June 12, 2012- Today, we started trying to feed her a bit more. She had been asking (sometimes literally begging) for food for a couple days, but had to be NPO for procedures. At this point, the vomiting began to get much worse. (Not sure if I even addressed the vomiting, but there ya go- lots of puke). She would eat, be happy as could be, and then with no warning whatsoever, everything for the last 6 months seemed to come up!
Today, her doctor told me that she did think she would have to have some type of surgery at some point. Whether this be abdominal, shunt externalization, a complete shunt revision, or a combination was unknown at that point. However, she felt very strongly that there WAS something going on that antibiotics alone would not be able to treat.

6pm- Grace had a yucky seizure. Eyes literally rolling around in her head and thrashing. Let's put this on the list of things I truly do not enjoy watching.
7pm- Noticed her words are getting more and more drawn out. Starting to wonder if she's post-ictal or if something else is going on???

June 13, 2012
Today started off great!! Grace got up and had a little breakfast and some juice. Then, the SWEET child life girl came an asked if she could go to the other playroom. So, off we went. She painted until the colors bled through to the table!! I caught lots of smiles, chuckles, an even a couple down right giggles. I hadn't seen her this way in over 2 weeks. When we got back to our room, we found a package with gifts. A baby jaguar for Grace, and a crocodile for Josiah. It was from our pastor and the church...the kids just loved them.
3pm- Grace had another episode. Not sure if this was a seizure, or what, but it was scary. She woke up from a sound sleep...screaming, crying, and sweating all over. This lasted for about 15 minutes. I didn't see any of the rhythmic movement that is a tell tale sign of a seizure though, so I think it might have been another terrible dream. She has been having horrible dreams for the past week, I think about all the stuff she's had to have done.

4:30 pm- Dr. Blatt came in and sat down. That's never good news. She told me that all the teams were now on board for her to have the shunt externalized. Tomorrow. She said that the chances that whatever this infection is JUST HAPPENS to be about an 1/8 of an inch away from her shunt tip without infecting the shunt were pretty much nil. While they do it, they will also try to get a PICC line into her, to give them better access for the antibiotics and blood draws. Scared mama....yes, I am. But..."What time I am afraid, I will trust in thee."

IV count- 7. Moving to PICU in the morning.