Update on Nate (and Clive)

Nate's back has puffed out again. Just like last time before he needed surgery again. It happened last Wednesday, and I sent a photo to neurosurgery. Dr. Tulipan said it was fine unless he was having symptoms (headaches), but I should feel free to bring him in if I thought I needed to.

Sunday evening I was working with Nate and laid him down on his back. He screamed in pain at his back, and immediately grabbed his forehead. That scared me. Then yesterday I realized that Nate is supposed to go back to school next week, and he still has this hump on his back. I've named it Clive. Clive freaks me out.

I called neurosurgery again and asked if we could move up his appointment. They said Dr. T had an opening today, so I took it. This morning, twice when Nate laid on his back he got headaches.

Dr. T said it didn't look terrible to him, but it's pretty obvious it's a spinal fluid leak again. If it was the first time this happened, he'd do exactly what he did last time--take him to the operating room to try to close it again. But he did the best he could trying to close it last time, and there's no reason to think that would work this time.

He said it seems this problem is caused by Nate's mild hydrocephalus, which didn't need to be shunted when he was a baby. There is pressure pushing that spinal fluid out of whatever hole it could find.

So the game plan is to have Nate on pretty strict bedrest for two more weeks (no returning to school anytime soon) and return to clinic as we were originally scheduled on Oct. 24. If it still looks the same or worse, we need to consider the shunt option.

Why a shunt? That would regulate the pressure of the spinal fluid, so it wouldn't be forcing its way out of the back. Dr. T is confident that would work, but he wants to give it a couple more weeks to heal on its own.

I asked about a spinal shunt, and he said a shunt in the brain would be much more effective, especially considering Nate's anatomy, which he is very familiar with now after seeing his insides 3 times now.

I also asked about another procedure called the Endoscopic Third Ventriculostomy, or ETV. He told me, as he did when Nate was a baby and we were having this conversation, that he does not do the ETV. He said he has done it once in a lab, and he would not be the one to ask to do this. I told him I had met Dr. Warf from Boston Childrens at the Spina Bifida National Conference, and he said, "Yes, I know Ben." Dr. Warf is pretty widely known as the best in the world at this procedure, which involves drilling a hole in the 3rd ventrical of the brain for the fluid to drain that way instead of inserting a shunt. Dr. Warf is a big believer in this treatment, and if it is successful, you don't have to worry about a shunt malfunction, ever. He offered to help us get in contact with Dr. Warf, whether that would mean traveling to Boston or talking to him remotely, about whether that would even be a viable option for Nate's particular scenario. I don't know if we would go this route, but you know me, I have to weigh all the options.

Dr. T did say that for a child Nate's age (in comparison with a baby), a shunt has a very low probability of malfunctioning. Plus, he would only need it for 3 or 4 months to give his back time to heal. He said at that time he could even remove the shunt. But really that would be an unneccessary surgery and we would most likely just leave it.

I know what many of you are thinking--Colleen, a shunt is no big deal, why are you making this into something bigger than it is? Yes, after five years of no shunt, I would be very disappointed to have to do this very permanent solution to a temporary problem. But obviously I'm not going to let my stubborness get in the way of what Nate needs. At this point, I want whatever it takes for Clive to go away.

So, I'm asking for people to pray for Nate over the next 20 days, that the swelling will go down and he will not need another surgery. But if the swelling doesn't go down, that God will give us the wisdom we need to make the right decision for Nate.