Boston Days 5 and 6

Well, we STILL have a room to ourselves! They probably don't want to hear my mouth about it anymore unless they have to. But since Dr. Warf asked to have us in a private room, I think they are trying to keep it that way. Plus the floor isn't quite as busy as when we came in on Tuesday.

Nate is feeling well. He really hasn't had much pain at all. He was first on morphine, but since he was itching they changed him to Dilaudid. I really don't think he was itching because of the morphine--I think it was just the anesthesia coming out of his system, because that happened after both of the previous surgeries. But Dilaudid did the trick. He slept A LOT yesterday. He woke up around 8 and stayed awake until about 4, then fell asleep till around 11:30 last night. I thought GREAT, because I was getting ready to lay down myself. But after a couple hours he was back out and slept till after 8 this morning, and he soon went back to sleep and was too tired to even eat breakfast. After Dr. Warf came around, we decided the narcotic was probably overkill at this point, and he changed him to touridol (sp?) which is basically like ibuprofen in an IV. He's had this before, and it works pretty well. On the one hand, it's nice when Nate sleeps because the rest will help him heal, and better him sleep than get bored and irritated with laying down. On the other hand, I don't like him totally drugged, and he's too sleepy to even eat. So we'll see how this goes.

Yesterday Dr. Warf came by and looked at the drain (EVD) and was happy to see it wasn't putting out much CSF (cerebrospinal fluid). I said I thought it looked like a lot, and he told me that the body makes about 500ccs of CSF every day, and Nate's EVD had only put out about 100ccs in the day after surgery. (Isn't it amazing all of the things our bodies do every day to keep us alive and well, and we don't think or even know about them?) That means he doesn't need the EVD very much.

So to explain this EVD a little. First, here's a picture, and then I'll explain it.

Look first at his head. That piece of tape at the top of his head is nothing--it's just left over from the bandage that fell off, and I don't want to pull his hair out right now getting it off. But near the pillow you can see a little shaved spot, and a little lower there is a small catheter coming out of his head. It has a few stitches in it so it won't just slip out, but they will be able to remove it at the bedside when the time comes. The tube goes over to that contraption on the left side of the picture. They have it set at 5 right now (see the little red marker between 4 and 6?) which is physically low enough to drain a good amount of fluid. They actually have a small level to make sure it's at the right angle. Dr. Warf will leave it at this level through the weekend to keep the pressure in his brain and spinal cord low so the back will have a chance to heal. Then on Monday, they will raise it to 10 or 15. As it gets physically higher, it will take more pressure to pump fluid out of the brain to drain out, so basically it drains less. They will see how he does with that, and if all is good, they will clamp the drain, and then remove it. He will remain flat until Thursday.

Every morning around 6, a big group of neurosurgeons rounds, but Dr. Warf is not with them. It's the strangest rounds I've ever seen. One morning they all walked in, one looked at his back, and then they all left within 30 seconds, literally. If I have a question, they all look at me like I have 3 heads. (Therefore I make a point of asking questions. Just a little game. Hey, I'm bored.) Then later in the morning, Dr. Warf rounds, and he's great as usual. Well, yesterday, the same thing happened, and when Dr. Warf was in he reiterated the plan to leave it at 5 through the weekend and start raising it on Monday. Well, a little while later, the nurse pops in and asks if anyone has come in to raise the EVD yet. Um, no? Then she comes back a few minutes later and starts raising it up to like 10. I was like, excuse me, what are you doing? She said there were orders to raise the EVD. I asked who placed the orders. Was it Dr. Warf himself? No, she said, it was one of his fellows, and they wanted to see what would happen ... if his drain would leak, if his back would leak. I said absolutely not. She needed to call Dr. Warf, and if he himself said to raise it, then we'll raise it. Otherwise, absolutely not. See if his back starts leaking? Are you kidding me? That would mean game over, start again. A little later she came in and said we were leaving it where it was. Riiiiight. This is really not a criticism against this hospital at all, just hospitals in general. It just reiterates that when anyone is in the hospital, you really have to watch and listen closely, because sometimes things do not get communicated well, and you have to be your own/your child's advocate.

This morning some nurses came in to measure his intracranial pressure (ICP). I said, oh boy, what does that entail. Fortunately they didn't even have to touch him, just put an extra thing on his EVD pole. Remember that anything less than 10 is normal, and the EVD is trying to get the pressure intentionally low. So his ICP is staying around 4 or 5 right now, and that's just right. Several times today it has gone as high as about 8, like when drinking through a straw, but more often it has been very low, like -6? That usually happens after he gets really upset, which pushes a bunch of fluid out, and then it's super low and sometimes that gives him a headache. I'm very used to looking at these monitors for his oxygen saturation, heart rate, etc, but this is the first time I've seen the ICP monitored, and it's pretty interesting and a little confusing.

Most of today was very laid back. Nate was either watching train movies or sleeping, and I was just sitting here trying to keep occupied on the computer, with work, or watching TV. It helps so much having my mom here to run out to get lunch or read stories to Nate while I take a walk.

This afternoon we got to Skype with Memaw and Georgia. This was right before Nate's nap, so he was especially grouchy. Georgia was just as tired and grumpy. But we talked for a little while. Georgia sat there looking at me and Nate and said very seriously to Memaw, "Tell mama to come home." Later, we got to Skype with Blake, and not even a minute after Nate saw him on the screen, he just burst out crying so pitifully and said, "I want to go home!" He was so genuinely homesick, it broke my heart, and I couldn't even say anything for a couple of minutes. This is hard, especially thinking about being here 2 more weeks. I'm especially sad for Georgia to not have her mama for this long. But, we do what we have to do, and we'll keep trying to make the best of it.

One last thing. Tonigh Nate has been playing with this blue tube thing for hours. You know one of those plastic tube toys that can scrunch up small or stretch out long? It's the simple things. We were playing together, one of us talking in each end at the same time, then talking in one end with the other end up to an ear, etc. We had this awesome, fun nurse tonight who was playing with the tube with Nate, and she made noises in one end for him to hear on the other end. He goes, "Hmm. When you breathe in it, this side smells wierd." She said, "Oh, sorry! Guess that was my breath!" Ah, five year olds.