Boston Day 10 ... Eventful

After last night's experience with the EVD leaking, I was awake a long time going over all the possible scenarios. I know I am no neurosurgeon, but I figured the fact that his ICP was high all day and then leaked out of the drain meant he just wasn't ready for his drain to be clamped. I wanted to ask Dr. Warf about leaving the drain open, just raising it higher to help wean him off the drain. It brought flashbacks of the NICU, when Nate was soooo slow to wean off the oxygen. He was on an 1/8 of a liter of O2 for weeks. Even though 1/8 liter is just a whisper of oxygen and should in no way make a difference, every time we took it off Nate, he desatted and needed it back on. I know Nate is not in control of how his body absorbs CSF, but this situation is soooo Nate. :)

Dr. Warf came bright and early this morning, and while I was expecting him to say we should take the clamping a little slower, instead he said he wanted to pull the drain today! Since the drain leaked last night, he does not want to risk infection. So he wanted to just get this show on the road a day earlier than we planned. He left the drain on 20 and raised the head of Nate's bed to 45 degrees. He said later today he wanted to clamp the drain and remove it either tonight or in the morning. Wait ... what?! I told him I didn't understand. If yesterday when he was clamped, he had high ICP and it leaked out of his head, wouldn't clamping him and sitting him up make it more likely to leak out his back instead? Didn't he prove he still had too much CSF to clamp? He said we've let this heal for nearly a week now, and it's time to start testing to see if it works.

After he left, my head was spinning. That was not what I had expected, but more than that, I was very nervous about his back leaking because we were being more aggressive. I felt sick to my stomach, and I just had a very bad feeling about this. I know Nate and his body. If you push him, it backfires. The nurse came in, and I asked her about it--Raising his head will make his intracranial pressure better, but won't the pressure in his back be even greater then? They didn't really know how to answer my question satisfactorily. I was so exhausted from the night that, despite trying so hard not to, I started crying to the nurse. I've said it before, I HATE crying in front of medical people. But I just apologized for the tears and kept asking questions. Well, when a nurse sees a mom crying, they jump into defender mode. The nurse I spoke to consulted with another nurse who came in to talk to me, and then the nurse practitioner. All of them let me know that they were also kind of surprised at the plan, and they understood my concerns, and they would not only pass them on to Dr. Warf but also go to bat for me. :) Which is totally unneccessary, but very sweet. (This is why I hate crying, because they think I'm not together enough to stand up for Nate myself.)

Nate had a very difficult morning. I don't know if it was from being so tired after staying up half the night, or residues from the medication, but he screamed the majority of the morning. I had flashbacks of our last encounter with oral steroids. :) He was upset about everything and nothing. Take this band-aid off! Put that band-aid back on! That kind of thing. Just as I got him calmed down and ready to take a nap ... we got another roommate. Ahhhhhh!!! Really? Today is a hard, hard day, and what would help us most of all is a little quiet. But, the roommate is a tiny baby who had surgery today, and the family is very quiet. And Nate quickly calmed down and has done pretty well the rest of the day. They've only witnessed a couple of good fits.

Dr. Warf was in the OR most of the day but came by this afternoon, presumably to clamp Nate's drain and raise his bed higher. I told him I had more questions. That I realize I am not a neurosurgeon, but I don't understand how this won't tempt Nate's back to open, if just yesterday he leaked from his drain. He understood my concerns, but he's also concerned about the EVD being in place for a week and it leaking last night and the risk of infection. I totally get that, and I totally want to avoid an infection, but I also want to avoid Clive happening again. All day all the nurses had told me they would watch his back closely, but if his back puffs out, it's pretty much game over, start at square one. I suggested we raise the EVD to 30 overnight, then clamp it in the morning, and then remove it tomorrow night. (My mom was just shaking her head and later said I'm the only person she knows who would make suggestions to a neurosurgeon,) He agreed to do that if it would make me feel more comfortable, and he still feels comfortable with that plan. I felt MUCH, much better after that. I like this plan. I think it's going to work.

Nate is doing great today on the new setting. His head is elevated to about halfway sitting up, his pressures have been good all day, and he hasn't been putting out a lot of CSF--except when he's throwing a good fit! Just as I was sitting here typing this, Nate is asleep next to me, and all of a sudden his ICP jumped from like 10 to about 22, and a bunch of fluid drained! What the heck! Not that anything is wrong, but what would make that happen, with him laying in the exact same place, asleep? Dr. Warf said your ICP can change when you're dreaming--isn't that crazy?

Unfortunately, we've also had a little urological issue (which teenager Nate would probably appreciate that I don't describe) that needs to be checked out in the morning. And tomorrow is the big day! Clamping the drain, and then removing it. We may be discharged as soon as Friday, or maybe Saturday. From there we will stay in their family house for the next week before seeing Dr. Warf one last time on Nov. 21. Today we booked a flight for Tuesday, Nov. 22, and we'll be back home for Thanksgiving. We will have a lot to be thankful for this Thanksgiving!