Hi there. I have experience as a Neurosurgery ICU nurse so mostly i deal with the patients that are immediately post op to about a month after depending on their symptoms. Occasionally we have patients come back months later with their further surgeries and flap placements. Have they discussed putting in a VP shunt? It would draw the extra CSF from her ventricles down into her stomach and help decrease the pressure in her brain. Obviously with the flap off, her brain has room to expand....but maybe there is too much fluid in her brain that is causing a change in her symptoms. They may need to do a Lumbar Puncture to get an idea what her intracranial pressure is and maybe drain some fluid temporaily to see if once her ICP drops and fluid has been drained off, she may regain some functions that have been on the decline. It is definetly a rollercoaster ride, that is for sure. But the important thing is, she survived a very horrible injury and has had improvements, so their is a good chance she will bounce back once again. If you feel like her neurosurgery team is not on top of her current downward spiral, it may be worth getting a second opinion. ANd yes, the flap needs to stay off for a while longer so that it is replaced once she is past all of these major ups and downs. Hope this helps.