Boston Days 7, 8 and 9

The last 3 days have run together. It's like that movie Groundhog Day around here. We're just sitting here waiting for Nate's back to heal.

On Sunday, Dr. Warf came by to see Nate and reiterated that we would turn up the EVD on Monday. But he said he was going to look at the fluid output after he left the room. A little later, one of the other neuros came in and said we were going to turn the EVD up today instead of tomorrow, and DON'T WORRY, Dr. Warf told me to do this! :) They know me well already. It had been on 5, but he saw that Nate was pumping out a lot of fluid, and he didn't want him to get too low. So they turned it up to 10. His intracranial pressure (ICP) stayed about the same, which is great. Then yesterday they turned it up to 20, and his ICP increased a bit, but nothing too alarming.

This morning, Dr. Warf clamped it. So the drain (EVD) is not draining any fluid, and this is a test of how well the ETV is working. Well, I was getting nervous this morning as I watched the ICP monitor. His ICP during surgery was 18, which Dr. Warf said was not enough to make him sick but certainly higher than "normal." He has also mentioned that 30 would be considered moderately high, like high enough to do a shunt or ETV. After being clamped today, it has spiked as high as 30 but would dip back down pretty quickly. At first it was staying in the low 20s all the time, but now it's mostly in the upper teens and frequently spiking into the 20s.

The nurses are all watching for classic signs of hydrocephalus. They actually gave me a booklet today on what signs to watch for. Ha! She has no idea about our history. We are not expecting that he would have the typical hydrocephalus issues--he's never had them before, and there's no reason that would have changed, and now he even has an ETV to help. What we're watching for is his back to puff out. Just the idea of this makes my stomach turn. At one point today my mom was looking at Nate's back and said he must be sweaty because he was so wet! I panicked, thinking it was CSF. Turns out he had peed on himself! Whew!

So we continue to watch him, and his ICP, and his back. We are hoping the ICP continues to decrease as the body once again adjusts to absorbing the fluid that we have been pumping out of his body for several days. He was pumping so much out that he was actually showing signs of dehydration. Now that he's clamped, he's peeing a LOT. :) He's not in any pain. Yesterday they switched him to chewable tylenol, and he hasn't even had that since last night. Pretty amazing for someone who had brain and back surgery 5 days ago!

Oh, our private room luck ran out. Last night we got a little roommate, a 5 year old boy having seizures. Last night wasn't so bad, but today their ENTIRE extended family was on that side of the room all day, along with the people having to do the EEG, a child life person, volunteers, and even the volunteer clowns! Get out of here! I actually think they are being discharged today, and I hate that the boy was diagnosed with epilepsy. Nice family, but we need our space. :)

Tomorrow they may or may not remove the EVD completely. I think everyone is a little nervous about the higher ICP. Ideally they would be lower. We shall see what happens.