We are ending our 5th week at Cornell PICU. They have been unable to manage the seizures so they settled with 15 seizures per hour. There is a surgical procedure that could be done to decrease seizures when medication doesn’t work, but the doctors told me it’s off the table for her. She is still intubated and five weeks is a long time to be intubated. The Doctors canceled the tracheostomy that was scheduled for Wednesday due to an infection in the trachea. Still fighting the infection. The steroids that were given to her during the past five weeks decreased her ability to fight infections. Finally off steroids as of today, we are hoping for improvement and stability. The goal is to have the tracheostomy and go home with all the medication she is currently taking. She is still on ONC201 every Sunday the hospital allows me to give her this chemotherapy drug that we purchased in Germany. Planning to go back for more soon as her three months supply is depleting.
We washed Pep’s hair today, she smells and looks pretty. The doctor put some pics of her on the wall. It was a nice gesture making us feel more at home away from home. I love giving her back and feet massages with aromatherapy lotions hoping she feels comfortable. They take good care of her here, sometimes needs to be enforced or followed up but for the most part she is in good hands.
One day at the time and enjoying her company. I am hoping for miracle. They do happen sometimes.