How’s Warren Doing?

Well, well… will someone please stop time?? I meant to go back to Monday’s short post but just never found the time. I’m trying to finish up Christmas shopping before my belly prohibits me from being able to wrap, find room for these boys who are rapidly approaching and getting all of their needs taken care of, spend quality time with my big man, knock out cleaning chores which will probably never be taken care of again, and the list of phone calls I need to make is ridiculous. I need a wife and a secretary! Ha!

With that being said, we headed to Duke this past Tuesday when we met with Warren’s neurologist and neurosurgeon. It wasn’t exactly the meeting we were expecting. The trip up there was thankfully uneventful. We arrived, did our usual quick feeding for Warren and filled out the clipboard of paperwork to begin the wait. The height/weight check had our guy at 36 1/2 pounds and almost 40 inches tall. We headed back to our room where we had an appointment with the neurologist first and we wait… and wait… and wait. Keep in mind that I didn’t have time for breakfast, and it was now lunchtime. We were suppose to have about an hour break between appointments, and I had packed us a ham sandwich lunch to have in the waiting room. Anyway, we ended up waiting over an hour before the doctor came in. It got to be quite humorous at how hungry we were. The twins were going crazy begging for food and Craig wasn’t much better. This never happens at Duke, but finally it was our turn.

We went to Duke and had that EEG several months ago, and this was our first meeting with the neurologist since that. So, he pulled up the EEG and went over that a little bit… talked about how Warren’s seizures are focal seizures meaning they always come from the same place… we discussed the medications we have tried and how nothing really seems to make a difference. That’s when he threw out a possible option that no one wants to hear: surgery. If it would help, then it’s an option that we have to consider. So, with that being where his mind was, he left to go consult with Warren’s neurosurgeon to get his opinion. Craig and I can hear them both going back and forth about what’s happening.

They both come in to speak with us. It was right then when I realized something. I’m sitting in a room with the Attending Pediatric Neurologist and Neurosurgeon at one of the best hospitals in the country who are exploring options on how to help Warren get better. This is why I fight for Duke my friends. Anyway, here’s the deal: First, we’re going to increase Warren’s Neurontin just to see if it will have any positive affect. If it doesn’t, it’s our option at either trying more medications or just staying where we are for the meantime. Next, they want to get an MRI done. Warren hasn’t had an MRI since our first few weeks at Duke before he got the shunt. All of this information is coming from CT scans which don’t show near as much detail. We are scheduled for our MRI in March, but I’m going to call and reschedule that for earlier. I just hope getting the MRI approved through Tricare doesn’t prove to be an issue. Please! It must be done at Duke, as it’s a much more complicated procedure for Warren than a CT. He will have to sedated… not an option… as it’s a much longer procedure. Even more critical, the “M” in MRI stands for magnetic, and Warren’s valve on his shunt is controlled by a magnet. An MRI could very well interfere with his shunt, and we have to be at a place where they could resolve any issues immediately. We’ll start that referral process next week and just pray that it goes smoothly.

Then what? Well, after they have the MRI, they’d like to put Warren on the books for their epilepsy conference which they hold every week. All of the top docs get together to discuss options for various patients. One of the main points of interest is the right side of Warren’s brain. Is there any damage there? Again, the CT scans are hard to see such details. Our neurosurgeon said many things but one of which was what a long process this would be. “We are here for you, but this is your decision.” He said it takes A LOT of committment from us because it’s not just a cut and dry decision. If Warren may be eligible, it requires a lot of tests and a lot of decisions. Warren’s eligibility really counts on a two things: First, they have to make sure that the seizures really are all coming from one place which is what it seems, and second… the right side of his brain has to appear almost perfect. If there’s too much damage on the right side, then they will not risk going in and doing more. There’s always a risk.

So, we wait. I’m going to increase the Neurontin like he said, but I don’t feel like I’m going to try any new meds if that doesn’t help. We can manage where we are, and we need some kind of consistency. I hope to get the MRI done in February, and then we meet with our neurologist again in March. All of this with two more small children.

A couple other points of interest from our meeting. I asked about Warren’s intelligence based on what he could read from the scans. I got the “we’ll have to see what he shows us” answer. Ugh. I know parents of children with CP who can say that their child’s intelligence is completely in tact. I wanted the same, but unfortunately I didn’t hear that. Sad. This fact we found quite interesting: one of Dr. Grant’s concern for surgery, for example, is where Warren’s speech center is now located. He said it’s usually on the left which has been damaged, but Warren’s injury happened so young that it could have moved over to the right side. Isn’t that amazing? I’m not sure how we figure that out for sure, but that would be so great! Last little tidbit, we have heard over and over again that Warren’s damage was in his occipital lobe. All of a sudden, I keep hearing the words temporal lobe, so I question that. Our neuro said that his temporal lobe has definitely been affected which tells me that there’s a larger span of damage than I knew. A year and a half later, it’s just something more to know to be honest. It doesn’t change anything that we deal with… just a small little sucker punch that hurts for a minute and then passes.

Well, while I’ve been writing this, none of you have sent over a wife or a secretary for me, so I must go. I know this post was long, but I use it as my way to keep up with things, too. The information I have just written isn’t anywhere else, so that’s why I include so many details. Time for Cheerios. Our weekend? Not sure. “The List” will continue to be addressed, and Mommy gets a girl’s night out tomorrow night with a dear friend for dinner (can’t wait when a glass of wine can be included in that). We hope that your weekend is terrific!!

Much love,

Craig, Amy, and Warren

This entry was posted on Thursday, November 12th, 2009 at 9:07 am and is filed under Updates. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.