Time is a funny thing. Some days drag on. Some days zip by. The baby is on day five in the ICU. His lumbar drain was removed this morning. He still has the drain in his head. Right now he is asleep after fighting a long day of pain. He was taken off pain meds for awhile. He is back on them now.
So what happened Tuesday? We checked into surgery at 6:45am. Big Tito and I had an hour to help prep Tito for his surgery. This included wiping him down with a special chemical, getting him into a gown, and distracting him with toys. At 8:00am prompt, the anesthesiologists wisked Tito out of my arms and disappeared. We were taken another direction and given a pager. At 9:15am, we received a page that the surgery was in progress. Every two hours we received updates. It took several hours for the surgical team to remove a large tumor from behind Tito's left eye. Unfortunately, the tumor originated on one of the nerves of the eye. The "3rd nerve" has been compromised. The baby seems to see. He just cannot move the eye. Both the eye and pupil remain fixed. Time will tell whether this damage will reverse itself.
The tumor could not be removed completely because it involves too much of the dura (the lining between brain and skull). The doctors removed as much of the tumor as they could. Then they grafted some soft tissue from another part of his head to seal the hole in the dura that was removed along with the tumor.
The rest of the 7 hour surgery involved a bone graft reinforced with titanium mesh to seal off the brain from the eye socket. The baby has NF 1 and was born with a portion of his skull bone missing on the left wing.
As of right now, the baby is doing well. I got to hold him today for a long time. He liked that. Once a room becomes available out on the floor, Tito will move.
We are comforted by everyone's support, prayers, and visits.