Day +7

Zoe is simply hanging out at her very high fever--104F-ish.

This morning when I looked at her, I did a massive shudder as I could see that Zoe's head had dramatically bulged along the cranial surgery sites on the right side of her skull.

In pictures we've posted of her--just have a glance at the one on the title page-- you may have noticed that the right side of her head is strangely bulging. The right side is where a lot of reconstruction took place, as well as a significant hole during surgery in the dura-mater wrapping of her brain. It's where she had that leak back in early December, and now it's where her skull is continuing to warp and inflate with her fever.

Dr. Michael Cunningham came by today to examine it--it was very good to see him. He brings a warmth and humor with him that's nice to be around. He wasn't acutely worried, but did order up a CT scan to make certain her ventricles weren't overly large (a sign of drainage issues).

While I was away on a walk today, the results from the CT came back: Zoe's ventricles were "slightly" larger, but not enough to concern him or the neurosurgeon, Dr. Avellino. They're definitely planning to keep their eye on her though.

So far, no concerning results back from blood culture tests. Manley tells us, again, that fevers can be common--even as high as what Zoe has. Apparently when the GI tract mucosa breaks down it sends GI bacteria into the body, and fevers can result.

With the mucositis that Zoe is experiencing, it's difficult to get her to swallow Tylenol to bring the fever down. Her tongue is swollen and bloody; her mouth looks like a cavern full of fleshy stalactites. A nurse mentioned today that anyone who could formulate an IV version of Tylenol would be rich person. They continue to up Zoe's morphine drip--as expected--to deal with her deepening discomfort.

Oh, forgot to mention yesterday that there is a manufacturer's shortage of an anti-viral that they have as an important part of Zoe's protocol. Manley said that patients such as Zoe will be given precidence, but it's concerning nonetheless. Not "tear one's hair out with worry" concerning, but definitely a furrowed brow "hmmmmm" sort of concern.

Speaking of hair, Zoe's is falling out fast. It's going to be awfully strange looking at that bumpy, distorted head without any hair to camouflage it.

She's still a beautiful baby in our eyes.