Boston Days 3 and 4 (surgery)

We knew there would be an MRI yesterday, just didn't know what time. Nate would not be able to eat past midnight, so I was hoping it would be early. At 8 they came in and said we could get in early! He was not happy about getting an IV, but they started a Thomas movie and he perked up. I got to hold him and Seal the Sea Lion while they gave him stuff to make him sleep. The MRI went fine, and he slept most of the rest of the morning and afternoon. Besides me getting no sleep and having a migraine, that part went fine and we were glad to mark one thing off our to-do list in Boston.
By the time he woke up, we started getting company! My mom laughed that I am the only person she knows who has friends wherever we go. :) Thanks to the wonderful world of Babycenter, mostly! So my friend Amy, and her little girl, Lilly (who has SB) stopped by after an appointment and brought Nate a great treat bag full of toys and craft supplies and candy! Even 3 trains! He was thrilled. A little later, I got to meet, for the very first time, my two good friends Angela and KT and their kids who are about the same age as Nate! They brought big mylar balloons (one SINGS) that Nate loves, and Thomas books that have helped tremendously in the past 24 hours, and other little gifts. Turns out this hospital is a great place for a playdate. The lobby and 1st floor have all sorts of interesting things to get into. (I really need to upload all the pics so far from our little trip and put on here. And trick or treating. I promise.) It was so nice of all these friends to come by and brighten our day to take my mind off the surgery.

The last two nights, Nate has had a very hard time going to sleep and getting settled. He's always a little grumpy and moody, of course, but when he's scared like this, the only thing he knows to do is get mad about it. He lashes out at me or my mom or the nurses or whoever is around. Last night I talked with him about what would happen with the surgery. We came all the way to Boston to get rid of Clive, and Dr. Warf is the best doctor in the world at this surgery (which I call the Clive-ectomy in my head). I told him he'd be asleep, and when he woke up, he might be sore and he would have a tube on his head. He was very calm about it, but he told me he did NOT want a tube on his head. I told him that was Dr. Warf's secret magic trick for making Clive go away. We also skyped with Blake, which was a lot of fun and made all of us feel better. All in all, it wasn't a bad day.

Around 6 this morning, a nurse woke me up and told me to get my things ready because they were ready to take Nate down to pre-op. I guess I got maybe 4 hours of sleep, better than the previous night! We took Nate downstairs and got him all ready for surgery, and he never even woke up! It made the anesthesiologist's job a lot easier! They just gave him a little Versed in his IV in case he woke up on the way to the OR without me, but he didn't.

Dr. Warf came by to talk to me before the surgery. He once again told me that the plan was to put in the external drain in his head and test for pressure. He did not think there would be high pressure (hydrocephalus), so then he would just close up Nate's back again. But if there was high pressure, he would do the ETV before closing the back again. I've learned that if I'm thinking something, I should just go ahead and say it, even if I might sound stupid talking to a world-renowned neurosurgeon. I said, "I almost hope he does have high pressure, because the ETV would be another safeguard against the back leaking again." He said he had been going back and forth about whether to just go ahead and do it, and if there were absolutely no risks, he didn't see any reason to not do it on anyway. But there are some very small risks. But he's done a couple thousand of these surgeries ... And then he started thinking out loud ... that if he did not do the ETV, just the drain, and after they clamped it and got Nate moving again, if he got another CSF leak ... well, we'd have to do a shunt. And that's what we have come all the way to Boston to avoid. So, he said, if I wanted him to, he would just go ahead and do the ETV regardless of what the pressure was. We both agreed that would be the best plan. I also felt like this was taking Dr. Tulipan's opinion into consideration, because he was sure that Nate had hydrocephalus.

Nate was back there for FIVE HOURS. It wasn't all surgery time--most of that was prep and set up. Dr. Warf had Nate laying on his back for the brain surgery part, then they had to turn him over and prep him for the back surgery. It was really two surgeries under one anesthesia.

Dr. Warf came out to speak with me after he was done. He tested the pressure in Nate's brain. Normal is anything 10 and under. (I don't know what the units are.) Nate was at an 18. That isn't high enough to make him sick, but it is above normal. He had told me previously that around 30 would be considered moderately high, if that gives any comparison. He said it could have been misleading because he was laying flat on Clive, which could have been sending extra pressure up to his brain. But this is what I've always figured for Nate--he had very slight hydrocephalus that probably could have been shunted but didn't absolutely need to be. My mom was saying that maybe this is why we have gone through all of this with the tethered cord, because Nate needed this procedure. It wasn't available to babies when he was a baby, and this is really the right timing. Dr. Warf said he could tell that this thing on Nate's back and the fluid in his head were "communicating" because after they drained off some fluid and did the ETV, they turned Nate over, and his back was FLAT! Whoo!

He told me in detail what he did to Nate's back, but about half of it was over my head. I appreciate that he tried though--he even drew me a picture! So from yesterday's MRI, he could see there was a pinhole in the dura--and it sounded like pretty much the same spot Dr. Tulipan had to re-close before--that had a strong stream of CSF shooting out to a slightly bigger hole in the fascia. I really only understood the part about closing the fascia by stitching it, then gluing it, then placing a flap of Nate's tissue over that. (Is this gross? I think it's fascinating!) Oh, and the pinhole was very close to one of his vertebrae, like at the very edge of his Spina Bifida defect, so he had to chip away a little bit of the bone. (I have learned that is called a laminectomy.) Okay, so then in that big hump under the skin, the body had created this jelly-like cyst thing to hold fluid (aka Clive). He had to get all that out, so it didn't try to fill up again, because Clives tend to like to do that. Then he put some deep stitches to really close that gap up good, and he put in a drain to get the gunk out over the next couple of days so it heals flatter and doesn't let anything start accumulating in there. I just saw Nate's back tonight, and hallelujah, it's flat! I was so excited.

So Dr. Warf felt very good about the surgery and that it will be successful. We are going a couple extra miles to make sure of that--first of all, the elective ETV, and second, a whole 7 days of laying flat. After a week in the hospital, he wants us to spend another week in the Boston area, but that week he is going to be in Japan. So we actually have to stay an extra 5 days, for a total of 3 weeks, in order to see him before going home. I was going to panic about it, but there's really not much point.

I finally got back to see Nate in recovery, and he was like a wild animal thrashing around. They had to immobilize his elbows because he kept reaching up to his head to grab at the drain. That would be bad. Nate has a little bit of a nervous tick of touching his nose and face a lot, and the more scared and nervous he is, the worse it is. So I think he was just doing that and was a little out of control because he was coming out of anesthesia. It was my job to calm him down, and luckily I had brought one of the Thomas books KT had brought last night, and we read and read and read. In the meantime, they gave him more morphine to calm him. He ended up going back to sleep for a couple hours until we got back up to the room. (Later, he didn't even remember reading stories with me, so hopefully he doesn't remember how scared he was when he woke up.)

Oh, one of my jobs today and yesterday was to complain to as many people as possible about the room situation so we could get a private room, or at least on the window side of a room for more privacy and space. I mean, I told everyone--every nurse and doctor I came in contact with, and even the chaplain, lol! When I was talking with Dr. Warf, I asked him how much risk there was of infection with this external drain, especially since Nate's roommate is throwing up constantly. He didn't like that Nate was rooming with a kid who might be that sick, but he said if it was a virus that wouldn't get his drain infected. He said he knows there are private rooms, because he has stayed in one with his daughter. I didn't say this out loud, but of course the neurosurgeon gets a private room on the neuro floor! :) By the time we got back to the room, Dr. Warf came around to check on Nate, and I heard him in the hall telling someone he'd like Nate moved to a private room or at least a window side of a room. This was after at least 3 nurses had told the charge nurse we wanted to move. (She probably hates me.) Later, my mom went on a little scavenger hunt around the floor and came back reporting there was one totally empty room. After I apologized for being obnoxious and asked the nurse if we could move there, we got the okay. :) We may get a roommate, or we may get moved again, but for tonight, we have our very own room. And the bathroom is all mine.

Nate has complained of headaches a couple times. It hurts around the incision where the drain is, and sometimes he gets low pressure headaches from draining all of this fluid out of his body. He is the grumpiest little guy. I can't leave his side, and Granna can do nothing right for him. He's yelling at one of us all the time. I think if I had brain and spine surgery earlier today, I'd be pretty mad too. He's resting really well now. Tomorrow will probably be pretty rough in the recovery process, but after that he should start feeling better every day, and our only problem will be trying to keep him laying down!

As always, thanks so much, everyone, for all the prayers, encouraging comments on the blog and Facebook, visits, meals to Blake and Georgia ... we are so blessed by you.