Day +76: Here We Go Again

It was determined today that Zoe needs to have surgery, ASAP, to install a shunt in her skull.

Last Friday we took her in for a consult with Dr. Michael Cunningham in the Craniofacial clinic to have a check-in about her progressively weird head shape and talk about where we go from here.

Yes, he said that her bumpy head was due to surgical suture blow-out during her high fevers, but that he wasn't concerned at that point about needing to act quickly based on how well she was doing and by looking at the most recent CT results from 7 weeks ago.

Her right ventricle looked rather large, but it wasn't clear as to whether it was large due to internal pressure pushing it out (not good), or a lack of external pressure keeping her brain contained (not as urgent of an issue). Apparently brains will expand to fill the space provided, and as there was a large amount of space created by the surgical sutures releasing, it was conceivable that her right ventricle grew as a result of brain expansion into the large bulge on the right side of her skull.

If the ventricle had grown due to internally produced pressure from undrained cerebral spinal fluid, a shunt would be needed to release the pressure. However, if the ventricle was determined to be large from the lack of external pressure, then a shunt would be the wrong path to take as it would cause the brain to deflate from unneeded drainage.

If I confuse, it's only because I care (and still suffer from brain mush due to sleep deprivation).

The CT scan also showed that the area of damaged brain tissue in the right temporal side of the brain was still quite visible--it was a dark mass on the screen. While it looked alarming to me, it wasn't much of a concern to Cunningham. She was young and full of tissue "plasticity" that would compensate for the damaged area, he said. Her state of being, the fact that she was doing so well, was the largest indicator of the overall health of her brain. That, he said, was a more important indicator than what we saw in the scans on the computer screen.

The meeting was left with Cunningham saying that he would review the CT's with Dr's Hopper and Avellino and that they would all confer on the best next step for Zoe.

This morning we awoke to find Zoe's soft spot on her head visibly larger (haven't we been down this path before?). The groove of trusting more and more in Zoe's smoother sailing from here on out got gouged out by the old familiar terror: What the hell was going on with her??!

I snapped some photos of her head,

sent them to Cunningham and then paged him. He got her in for a CT scan by 12:30, and by 2:30 we heard from him that her right ventricle was indeed larger than the last scan had shown, and that the neurosurgeon on call said that she would need a shunt.

I don't know many of the particulars about what this means (How long will she have to have a shunt? How serious is the surgery? What is projected recovery? How do things change with an immunocompromised patient?), but tomorrow we will likely meet with neurosurgery and learn more.

Stay tuned.