Category Archives: Update

Barnaby came off the ventilator today and is on CPAP via a nasal mask that straps to his head and makes him look like an elephant seal. 🦭 The thought of being intubated while fully conscious is a terrible one, it’s something an adult would never tolerate. Still, it’s hard to say if he looksContinue reading “Extubation, Day 19”

Morning rounds just finished. The doctors basically don’t know what Barnaby is up to.  We came in early this morning to sit with him and it’s so hard to tell what are normal movements that we might have seen before and what are artifacts of what was happening last night. He isn’t having the kindContinue reading “Day 18”

After surgery we were back in the room with Barnaby and he was sleepy and kind of staring off into space barely blinking as he came out of anesthesia.  Ana and I were both exhausted and hungry, we had gotten here early this morning and done a lot of stressful waiting so we went toContinue reading “After Surgery Complications”

Ana thinks that Barnaby’s Surgeon at Children’s Hospital looks like a wise old turtle 🐢 . He is one of the most esteemed pediatric neurosurgeon in the world. A recipient of the macarthur genius grant, a professor at harvard medical school, and he literally invented one of the surgeries commonly used for barnaby’s condition ofContinue reading “A wise old turtle gave Barnaby his first haircut”

Barnaby just took a ride in his transport “bus” down “the pike” to children’s hospital. We met Dr. Warf and he was very nice. Now we are in the waiting room here at children’s. They expect the procedure to take about an hour and a half but said not to be alarmed if it goesContinue reading “To Boston Children’s”

Tomorrow Barnaby is headed to children’s hospital for an operation to get a ventriculosubgaleal shunt. This is a procedure that will hopefully prevent the need for a more permanent shunt (the kind that drains excess spinal fluid into an abdomen through a longer tube) and is much more effective on very small babies. This “subgaleal”Continue reading “Surgery Scheduled”

After a testing holiday over the weekend Barnaby’s head ultrasound today showed more dilation of his ventricles. It isn’t a huge amount but it shows a trend in the wrong direction.  Dr. Warf visited Barnaby today from children’s hospital. He is one of the top pediatric neurosurgeons in the world and literally invented one ofContinue reading “Monday Day 15”

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 forContinue reading “Friday, Day 12”

Two nice visits to the NICU today. On the second one Ana got to hold Barnaby against her chest for an hour. His brain ultrasound today showed his ventricle pressure as stable. Ultimately we hope it diminishes but we’ll take stability for the time being. His stomach infection (NEC) seems to be clearing up. HisContinue reading “Stability, Day 10”