So Long, Brain Sock!

May 17, 2021

Hello everyone! Have a #MakeZaneBetter update, but it's really not much. Most docs involved with Zane's current situation have checked in. The EEG he was on overnight did not indicate any additional seizures. He had a "fit" this morning while still attached to the EEG and it did not indicate that it was a seizure. These are "fits" he gets at home from time to time and we can usually talk him calmly out of those. What happened yesterday morning was something else entirely and frankly, frightening.

The brain bleed is still being reviewed. Zane did receive another unit of blood last night (2 total yesterday) so I'm asking where did all the blood go? He had a brain MRI yesterday and while talking with the neuro folks this morning, they say it's a very thin layer of old blood with some new, so I'm still trying to get the answers there and I have informed Zane's neuro oncologist at St. Jude about this, so he's in the loop and asking his questions as well. While talking with the neuro team, we were interrupted as there was an emergency next door. I heard shouts about Fentanyl, Propofol and a ventilator. Things got crazy for a while and I remember all too vividly those moments being daily in our lives last May. I don't know her name, but she's in some serious trouble. so let's all send good vibes to all the patients in some difficult spots.

Zane, however, has stabilised back his "normal" for now, so we are being kicked down to a PCU (progressive care unit) out of ICU sometime later today when they yank all the EEG wires off his head. So long to the Teletubby look!

Here's a snap from last night as I was coming back to the hospital from my home shower break (no showers in ICU units).