The doctors and nurses have been pleased with Evan's recovery and we have too, but it's been hard to see the expression of pain on his face for the past couple days. Today he smiled and actually spent about an hour this evening joking with us and being very animated. We were so happy when we heard him giggle for the first time. Evan spent most of the yesterday and today sleeping, but we think tomorrow will be "game on!"
Rob's brother Chuck came up to NY yesterday and it has been great to have him here. Evan has enjoyed having him with us and Rob and I were able to leave the room to look at the MRIs with the surgeon. It really is a huge help to have an extra adult in the room.
Evan had an MRI before yesterday's surgery and another one this morning. The purpose of the second MRI was to view the placement of the grids Dr. Weiner put on Evan's brain to map his seizure paths. We were able to seen all the grids on the MRI and it was pretty cool -- in a geeky, medical way.
Now we wait for seizure activity. The goal is to capture enough seizure activity through the grids to be able to give Dr. Weiner even more specific information about the area he will remove. So, this is the time we hope for seizures. The second surgery is scheduled for Thurs., 11/15, so if Evan is consistent, They'll have enough info by the end of the weekend to make a solid evaluation.
November 10, 2007
November 08, 2007
Dr. Golden Hands
Thank you everyone for your posts to the blog, phone messages and good vibes! Evan had his first surgery today and everything went well. Dr. Weiner has done a decent amount of work in Italy and they have a nickname for him that translates to "golden hands". Can't ask for more than that!
Dr. Weiner said he was able to see the tuber he's going to remove and feels really confident about the next surgery. He expected this surgery to take about three hours and he was done in half the time! Evan was in his room at 3:00 and he's pretty wiped out and sleeping soundly so far.
That's the basic update, I'll post more later.
Dr. Weiner said he was able to see the tuber he's going to remove and feels really confident about the next surgery. He expected this surgery to take about three hours and he was done in half the time! Evan was in his room at 3:00 and he's pretty wiped out and sleeping soundly so far.
That's the basic update, I'll post more later.
November 07, 2007
We're in NY
We got up at 4:30 this morning to fly up to NY and although it was a bit stressful getting everything together last night, we were glad to have been here early. It gave us a chance to get settled and make sure everything was in order for tomorrow. It is, and Evan will be at the hospital at 6:45am tomorrow morning. He'll get anesthesia, have a MRI and then go directly into surgery. Whew. We are expecting him to be away from us for about 5 hours, so hopefully we'll have some info by 2:00pm about the first surgery. Wish him luck and we'll post when we can tomorrow.
November 05, 2007
ta-ta Topamax
One of the things about shifting Evan on and off anti-epileptic drugs that always surprises me is the side effects we see, or more frighteningly don't see. It is not uncommon for a drug to have some seizure control for a couple weeks and slowly the seizures ramp up again. The drugs all effect him differently, causing sleepiness, aggressive behavior, insomnia, cognitive regressions or just a general dulling of his personality. The thing that makes it tough is that the changes happen slowly over time, so they are easy to miss.
When we notice the differences in Evan, we start wondering if it's the drug or a side-effect of the seizures themselves. Only when he comes off a drug do we really see clearly what the real culprit was.
We just completed a wean off Topamax and it's astounding to see how different Evan is now. I feel like we did him a real disservice keeping him on that one for as long as we did. He was only on it a few months but it really slowed him down mentally. In the last week we've seen him become much more engaged and talkative...actually he doesn't shut up now. He's creating imaginary games about going to the moon in his rocket ship and has his attention span back. He hadn't been playing with his trains as much and now he's at the train table for over an hour at a time. He's having long and involved conversations with us instead of one or two sentence conversations.
I'm happy to see our son's true personality is back, I just wish we'd pulled him off Topamax sooner.
When we notice the differences in Evan, we start wondering if it's the drug or a side-effect of the seizures themselves. Only when he comes off a drug do we really see clearly what the real culprit was.
We just completed a wean off Topamax and it's astounding to see how different Evan is now. I feel like we did him a real disservice keeping him on that one for as long as we did. He was only on it a few months but it really slowed him down mentally. In the last week we've seen him become much more engaged and talkative...actually he doesn't shut up now. He's creating imaginary games about going to the moon in his rocket ship and has his attention span back. He hadn't been playing with his trains as much and now he's at the train table for over an hour at a time. He's having long and involved conversations with us instead of one or two sentence conversations.
I'm happy to see our son's true personality is back, I just wish we'd pulled him off Topamax sooner.
October 26, 2007
Neurotic? Me?
Ok, so I totally got busted for being a neurotic germ-o-phobe this week. We've managed to get Evan to a point where he is pretty healthy -- no small feat at the beginning of flu season -- and we're trying to maintain this healthy level until surgery. Can you say quarantine?
This week Evan had an appointment with his pediatrician, Dr. Hoang, and even the best pediatric offices are life-size petri dishes. A serious danger! I thought this through though and had my mom wait in the car with Evan until his name was called. We quickly whisked him through the waiting room and into the germ-infested examining room. Once in the exam room, I promptly began wiping down every surface with the Clorox wipes I smuggled into the office, working as quickly as I could before Evan touched too many things.
Everything was going exactly as planned. I was feeling pretty good about my Clorox wipes idea and had no problem ignoring the smirks I was getting from my mom. So, there I am, on my knees wiping away and in walks Dr. Hoang! Busted. Neurotic.
This is what I thought until I laughed and admitted what I was doing and it turns out Dr. Hoang thinks I should be even more neurotic! I have been given carte blanche from a medical professional, so look out! She said I was completely sane for being super cautious and that I should ramp it up. She said to give Evan a bath as soon as he gets home from his appointment and put Aria directly in the tub as soon as she gets home from school each day!
We won't be installing a portable biohazard decontamination shower outside our front door, that would be crazy...plus it's too expensive, I checked.
This week Evan had an appointment with his pediatrician, Dr. Hoang, and even the best pediatric offices are life-size petri dishes. A serious danger! I thought this through though and had my mom wait in the car with Evan until his name was called. We quickly whisked him through the waiting room and into the germ-infested examining room. Once in the exam room, I promptly began wiping down every surface with the Clorox wipes I smuggled into the office, working as quickly as I could before Evan touched too many things.
Everything was going exactly as planned. I was feeling pretty good about my Clorox wipes idea and had no problem ignoring the smirks I was getting from my mom. So, there I am, on my knees wiping away and in walks Dr. Hoang! Busted. Neurotic.
This is what I thought until I laughed and admitted what I was doing and it turns out Dr. Hoang thinks I should be even more neurotic! I have been given carte blanche from a medical professional, so look out! She said I was completely sane for being super cautious and that I should ramp it up. She said to give Evan a bath as soon as he gets home from his appointment and put Aria directly in the tub as soon as she gets home from school each day!
We won't be installing a portable biohazard decontamination shower outside our front door, that would be crazy...plus it's too expensive, I checked.
October 23, 2007
Pre-Surgical Meeting and Testing
Yesterday was a really big day and we are all exhausted today. On Sunday, Rob, Evan, Chuck and I went to NY in preparation for a full day of testing and appointments for Evan. We stayed at the Ronald McDonald House and my mom stayed in VA with Aria. Having Chuck with us on this trip was extremely helpful. It allowed us to really focus on our conversation with Dr. Weiner and Evan loved having so much special time with Chuck!
Our first stop was pre-operative testing. They checked Evan's vitals, got his medical history and drew blood for a full work-up. Although Evan wasn't thrilled about having blood drawn, he did really well and was so cooperative. Next, we met with a doctor from the anesthesia team. She was informative about what to expect the day of surgery and praised us for having already been to a cardiologist and having the report for her. We were just following directions! Apparently, if we hadn't done that in VA, she'd have sent us to get it done at NYU Hospital while we were there. She also said if anyone comes to our house with a cold or a cough, we should politely send them away. If Evan isn't healthy, the anesthesiologist can veto any surgery.
Our final and most important appointment was with the neurosurgeon, Dr. Weiner. While Evan was having testing done, Dr. Weiner's office called to let us know he was running a half hour late, so we took our time heading over there. When we got to his office, Dr. Weiner came out to tell us he had two emergency brain surgeries so he needed to push our appointment back a bit, but would meet with us between the surgeries. He seemed very calm and relaxed while he told us this, but it seemed pretty dramatic to us!
Before we went to lunch to fill the time prior to meeting with Dr. Weiner, we met with the nurse practitioner in his office who answered some of our basic questions...we don't have to shave Evan's head...they will shave the incision site only...the good bed in the PICU is by the window and she'll try to use her pull to get it for us...Evan will be on IV antibiotics and steroids the whole time he's in the PICU to keep swelling down and avoid infection...He'll have an MRI immediately before the first surgery and another one the next day to see exactly where all the grids are...the steroids will make Evan ravenously hungry...etc.
After lunch we went back to Dr. Weiner's office and Evan played with a couple kids in the waiting room. We used ample amounts of anti-bacterial hand wipes and gel throughout the day and actually used the entire container Chuck brought with him -- it was in a neat spray bottle and much cooler than the ones we buy!
Dr. Weiner got back to his office, looking every part the surgeon in his green scrubs and hair sticking up -- presumably from the hat he was wearing during surgery. He was great to talk to and discussed the surgery in detail. He's personally done about 500 epilepsy surgeries and 45 of them were TSC patients. We were a little surprised the number wasn't higher on the TSC surgeries, but we have to remember that this is a rare condition. He went over lots of statistics and NYU fares very well. We had already decided to do the surgery at NYU and much of what he said was reassuring and consistent with what we had already researched. Generally speaking, Dr. Weiner seems very down-to-earth and in spite of his reputation, very humble. He is an extremely likeable person without any attitude we might have expected from a highly accomplished neurosurgeon.
He also has a sense of humor...I came up with this idea of challenging him to a game of Operation. I ran my idea past a few people and some thought it would be disrespectful, while others thought it would be funny. They are probably both right. Since he had a second emergency surgery to perform, I just presented the game to him -- he seemed quite amused and happy to get the Operation game. He said nobody had ever given him Operation before and I was a little surprised -- it seems like such an obvious thing to give a surgeon! We pointed out that there is a "brain freeze" he can remove. He said he's going to bring it home to play the game with his kids...we're rooting for Dr. Weiner!
Our first stop was pre-operative testing. They checked Evan's vitals, got his medical history and drew blood for a full work-up. Although Evan wasn't thrilled about having blood drawn, he did really well and was so cooperative. Next, we met with a doctor from the anesthesia team. She was informative about what to expect the day of surgery and praised us for having already been to a cardiologist and having the report for her. We were just following directions! Apparently, if we hadn't done that in VA, she'd have sent us to get it done at NYU Hospital while we were there. She also said if anyone comes to our house with a cold or a cough, we should politely send them away. If Evan isn't healthy, the anesthesiologist can veto any surgery.
Our final and most important appointment was with the neurosurgeon, Dr. Weiner. While Evan was having testing done, Dr. Weiner's office called to let us know he was running a half hour late, so we took our time heading over there. When we got to his office, Dr. Weiner came out to tell us he had two emergency brain surgeries so he needed to push our appointment back a bit, but would meet with us between the surgeries. He seemed very calm and relaxed while he told us this, but it seemed pretty dramatic to us!
Before we went to lunch to fill the time prior to meeting with Dr. Weiner, we met with the nurse practitioner in his office who answered some of our basic questions...we don't have to shave Evan's head...they will shave the incision site only...the good bed in the PICU is by the window and she'll try to use her pull to get it for us...Evan will be on IV antibiotics and steroids the whole time he's in the PICU to keep swelling down and avoid infection...He'll have an MRI immediately before the first surgery and another one the next day to see exactly where all the grids are...the steroids will make Evan ravenously hungry...etc.
After lunch we went back to Dr. Weiner's office and Evan played with a couple kids in the waiting room. We used ample amounts of anti-bacterial hand wipes and gel throughout the day and actually used the entire container Chuck brought with him -- it was in a neat spray bottle and much cooler than the ones we buy!
Dr. Weiner got back to his office, looking every part the surgeon in his green scrubs and hair sticking up -- presumably from the hat he was wearing during surgery. He was great to talk to and discussed the surgery in detail. He's personally done about 500 epilepsy surgeries and 45 of them were TSC patients. We were a little surprised the number wasn't higher on the TSC surgeries, but we have to remember that this is a rare condition. He went over lots of statistics and NYU fares very well. We had already decided to do the surgery at NYU and much of what he said was reassuring and consistent with what we had already researched. Generally speaking, Dr. Weiner seems very down-to-earth and in spite of his reputation, very humble. He is an extremely likeable person without any attitude we might have expected from a highly accomplished neurosurgeon.
He also has a sense of humor...I came up with this idea of challenging him to a game of Operation. I ran my idea past a few people and some thought it would be disrespectful, while others thought it would be funny. They are probably both right. Since he had a second emergency surgery to perform, I just presented the game to him -- he seemed quite amused and happy to get the Operation game. He said nobody had ever given him Operation before and I was a little surprised -- it seems like such an obvious thing to give a surgeon! We pointed out that there is a "brain freeze" he can remove. He said he's going to bring it home to play the game with his kids...we're rooting for Dr. Weiner!
October 18, 2007
Cadiologist
Prior to surgery we had to take Evan to the cardiologist to be checked out. This required of any patient with TSC because many of these patients have heart defects along with the litany of other issues that come along with this disease.
Evan never got his heart checked while we were in the testing process to see the extent of the organ involvement. At the time he was phobic about the medical community and any big issues with his heart would have shown up by then, so we put it off a bit. We just never got around to following up on that.
We had a little anxiety about what the results would be, so Rob and I were just a little on edge, hoping not to add anything new to Evan's growing medical chart. We were in the office for two hours while Evan had an EKG and a sonogram of his heart. When the doctor looked at everything and came back in the room he said, " Evan's heart is absolutely perfect."
Whew!
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