We just listened in to his morning rounds when the big team of doctors and nurses and pharmacists and nutritionists all gather outside his door each day and read aloud to each other from their rolling computer workstations.
Generally he is doing well.
They have decided to take him off phenobarbital and just observe for signs of seizure. He still has an effective therapeutic dose in his system as of right now but it’s dwindling and there haven’t been any concerns.
His brain ventricles seem to be effectively stable despite two days in a row with unsuccessful spinal taps where they were unable to get any fluid out. They will try one more tap today and if they don’t get anything they will not keep trying. The plan then is to monitor the pressure through head ultrasounds that show ventricular dilation. If anything worsens then the next option is explored with the neurosurgery team at children’s hospital.
From our perspective he is more alert and more expressive doing more baby like things. He can’t vocalize as long as he is intubated but he scrunches up his face like a cry when he is unhappy and looks relaxed when he is happy.
Barnaby 