2015 VEEG - Day 2

Today was a busy day! Evan played video games, watched a movie, created an art project, made smoothies, met a magician and had a music therapy jam session!

We had to try again to get an IV and this time they brought in a nurse who has the reputation of always getting the vein. He was amazing: gentle, soft spoken, calm, confident and precise with a needle! Evan was quite nervous but had no need to be and we were all relieved to see the IV functioning perfectly.

Evan hasn't had any seizure activity yet so we will reduce his medication tonight to see if it will push him into having one. We spend so much time trying to prevent seizures that it is hard, even after years of doing this type of testing, to fully embrace the idea of wishing for a seizure. But we don't get to leave until he has one so, seize baby seize!

They also want to do is a SPECT scan. This requires an injection of a radioisotope as soon as Evan has a seizure followed by 3D imaging to determine the specific areas of the brain impacted by his seizures. The challenge is that Evan's seizures typically happen in his sleep and they have to have a nurse sitting next to him ready to insert the radioisotope and at NYU this has to be done between 9am and 3pm. So, they will try to switch Evan's days and nights to get this test. They want us to keep him up until 4am it too! Yikes!!

2015 VEEG - Day 1

The first day of a video EEG always has its ups and downs.

We were up early to travel to NY and met with Dr. Devinsky before checking into the hospital. Evan did a great job getting the EEG hooked up. This used to be so hard but he's growing up and some things are easier now.

We had a visit from a therapy dog that everyone enjoyed, especially Mindy!

Things turned a little for the worse when it was time to put an IV in. Evan has a lot of anxiety about needles and the nurse blew the vein when she tried to insert the IV. Evan was doing so well up to that point and then made it pretty clear that he didn't want them to try again. We ending up refusing the IV at least for tonight. We will revisit the conversation tomorrow.

NYU or Bust!

We are on way to New York City and looking forward to seeing the brilliant doctors at NYU Hospital who have always been so good to Evan.

We have an appointment with Dr. Devinsky at noon and after that visit Evan will be checked into the hospital for monitoring. He will have a video EEG and luckily he didn't have s seizure right before our trip so hopefully he will have one quickly while being monitored and we will be able to get some answers soon.

It's a strange feeling to take your child to the doctor for evaluation for brain surgery -- you hope they say he'll be a good candidate for surgery and you dread the reality that comes with that knowledge. In the end the best possible outcome is to have options, so that's what we are hoping for!

Moving Forward

It's been a while since I posted anything and I guess it just feels too depressing to post that Evan had another seizure, the meds aren't working and we are scared. That has pretty much been the routine lately.

Ever since our trip to Texas we have been grappling with the idea of what it would mean for Evan to have brain surgery. The risk is that he may have a permanent deficit on his left side, particularly his left hand. The expectation is that he could end up with a "helper hand" and be unable to perform tasks requiring fine motor skills. He could be seizure free but there is never a guarantee of that either.

It's different talking about a potential surgery with an 11-year-old and important to honor his opinions throughout the process. Evan is more brave than Rob and I and has told us he wants to have brain surgery. He will go on to say that stopping his seizures is more important that the use of his left hand. Heavy topics of discussion are going on in our house on a regular basis!

So, we are going to NYU Hospital next week where Evan will be evaluated for brain surgery. He will be in the hospital for about a week for monitoring with a video EEG. We are hopeful for positive answers  from this amazing team who has already changed Evan's life for the better.

Regrouping

Last week we met with the doctors in Houston to talk about the results from the very thorough testing they did. Evan was all smiles in his cowboy boots with DS in hand. It was good that he had it because it offered him a complete distraction to everything that was going on and being said.

We learned that the seizures were coming from a different location, near the original surgery site. We were shocked to hear this and I think the docs were just as surprised to be telling us. The area in question is very close to the motor strip so Evan is not a candidate for the laser surgery because it is such a crucial area of the brain. If he has surgery it would have to be using more traditional methods because the surgery is actually quite complex and would have the detrimental side effect of permanently damaging Evan's left hand. It's not clear how well he would be able to use his hand. 

So we are regrouping and looking at other options. Prior to this news we were talking about the possibility of having surgery while we were still in Texas so the shift in direction really threw us for a loop.

Unwinding in the country

After spending a week in the hospital we were thrilled to take a break at our friends' farmhouse about an hour outside Houston. It's the perfect weekend escape! The kids are loving being able to hang out in the pool and it was so relaxing and rejuvenating. I love being away from the energy of the city to have a chance to really unwind.

We had lunch at a 50s style diner where the waitresses wear poodle skirts and they play old music. The kids got a real kick out of it.

Highlights were milkshakes, the pool and catching lizards. Back to the basics to connect as a family.

There is something exhausting about getting all this fresh air -- or maybe we are still recovering from last week! Every is ready for bed early tonight.

These boots are made for walkin'!

As soon as we knew we were coming to Texas I started saying we needed to get boots while we were there! Today was Evan's first day out of the hospital and Grandpa Fred gave him an IOU for a pair of boots when he and Grandma Lynell visited in the hospital so today was the day!

It's nice to have something fun to do after being in the hospital for a week.

We spent the day being pretty mellow and enjoyed hanging out at the Ronald McDonald House playing outside, watching a movie and having some low key family time.