Brain surgery #3
Moving forward, we’re going to change the tone and level of information in these blog posts. Juliette and her peers are getting smarter and more observant every day. We would hate for another child to overhear adults discussing something we shared here and relay that information to Juliette.
Juliette’s November surgery and recovery have reminded us how aggressive and unpredictable ependymoma can be.
On November 11th, Juliette went in for her third brain surgery and was discharged the next day. Many things, like blood draws and MRIs, have become easier over time as Juliette experiences them more. Surgeries have been progressively more difficult. When she wakes up after the surgery and recognizes that she’s in the ICU she becomes inconsolable. This time, she began wailing “I don’t want to be sick anymore” which was exceptionally heartbreaking since we’ve never told her that she’s sick.
The week of Thanksgiving, only two weeks later, we found ourselves back at Boston Children’s Hospital. On November 27th, Juliette’s cousins arrived, and within a few hours Juliette told us her incision felt “wet.” We rushed her to the hospital, where they determined that the incision was leaking cerebrospinal fluid (CSF) and she underwent an emergency procedure to repair her incision leak. The neurosurgeon was concerned that the CSF would rupture the incision again, and so they recommended a lumbar drain. A rubber tube was placed in her spine so CSF could be drained into a bag every hour, 24 hours / day; this was done to keep the CSF pressure down in order to improve the odds the incision healed properly. Six days later, we were discharged. This inpatient stay was particularly grueling as she was unable to leave the floor and was confined to a wheelchair.
For all of December Juliette was under strict orders to limit exertion in order to facilitate wound healing, unable to participate in active play. Come January she was thrilled to return to gymnastics and all other physical activities.
