Dare I hope? Have we turned a corner? Yesterday Julia slept all day...literally. From about 9am to 7pm she did not wake up. Most of that was due to the Ativan she got earlier to stop the shivering, and some sedation she received to get her PICC line put back in. But that was by far the longest stretch of sleep she's had since we've been here. From the time she woke up until now we haven't seen any weird episodes, minimial irritability, her fever has been kept in a low range (no higher than 100 degrees), and she's been herself for the most part. We've been able to get her to eat and drink, even though the amounts are still small. She slept on and off overnight and is sleeping now.
They are doing a urine culture to see if the fever could be caused by a UTI. All of her bloodwork and cultures continue to be normal. We also got reassuring news that the staph variety from the original culture is Staph. epidermidis which is treatable with Vancomycin so even if the infection were real (and everything indicates it's not) it's manageable. The other possibility is this is a reaction to the Vancomycin, or related to the thrush.
We wish we could either get her over this fever or get to the bottom of it quickly because this will be the only thing to keep us here. Otherwise she's ready to be released to Cincinnati Children's for rehab. We are still not clear on if we can do outpatient instead of inpatient, we need to learn more about what insurance will cover, differences in services, etc., but being back home will make such a difference for us.
Daniel's first birthday is on Saturday and although Julia's health is the priority I will be pretty disappointed if I miss it. I miss him so much and want to be home again badly. Fingers crossed that it will be soon.