We were transferred to Cornell’s PICU and the seizures are not under control. They took 30cc of brain fluid thru the Omaya catheter this morning again to have hydrocephalus under control. The shunt is not an emergency as we have the Omaya catheter to take care of the problem for now. Breathing is still assisted. Low blood pressure has been controlled by the meds and a temporary central line access to the artery was placed by her leg as her veins are collapsing with so many IVs
Seizures are not responding to meds. We are talking about suspending all meds and see if she could breathe on her own if not sedated. We'll decide after discussion with the team. I think she needs time and nutrition before we decide to make a move at all. She fastens her seatbelt on an airplane or car, she takes care of herself and doesn’t want to die. This is not something she wanted to even talk about, so we will wait for her as she deserves the best chance.