Monday, May 3

The neurosurgeon came to talk to us Monday morning about the CT scan done Sunday. Even though Collin's ICP numbers were still low even with the drain clamped, he said the ventricles were slightly enlarged, so before placing a shunt he wanted to perform an Endoscopic Fenestration, where he would go in through the drain site with a tiny camera to look for any clots that could be blocking the ventricles or aqueducts that are the passageways in the brain for draining the CSF. After the procedure, he told us he had found two sesame seed sized blood clots which he was able to remove, so instead of placing a shunt, he replaced the drain to see if the CSF would now drain better on its own. He had hoped to be able to do an Endoscopic Third Ventriculostomy, where he would create another passageway in the brain for the CSF to drain; in order to perform the procedure with the least amount of risk, the area had to be translucent so damage to the brainstem could be avoided. The area in Collin's brain wasn't translucent because there were tumor seeds there, so he was unable to perform the procedure. He said the presence of the tumor seeds wouldn't alter the treatment or prognosis of Collin's cancer, but I still got a sick feeling in my stomach.

The Broviac catheter was placed by a pediatric surgeon after the neurosurgeon was done with Collin. When he was done in surgery, we were able to go the the Post Anesthesia Care Unit, or PACU, to be with Collin as he woke up. Prior to the surgeries that day, Collin's head had a dressing over the drain tube coming out of his head, so I wasn't prepared for what his head looked like without the bandage. The sight of his little body again brought me to tears.

The oncologist has been stopping by regularly, keeping close tabs on Collin, and as soon as he is finished with all of the neurosurgery issues, she will take over as his primary doctor. She again said how her goal is to start chemo three weeks after the tumor resection. It suddenly hit me that we're not going to make it home again before chemotherapy starts.