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!
2 comments:
Challenging the neurosurgeon to a game of Operation is SUCH a Moss thing to do! He may beat his kids, but I'm sure you would have beaten him (but would you really want to???). . .
I had a wonderful chat with your firstborn. Sounds like she's keeping Grandma busy! I'll say it again, you're doing a great job managing all these details and giving both the kids such a normal life in spite of this challenge! I'm proud of you, and here to help as I can when you need it.
Tori's being very careful to avoid contagious people before she comes to visit you tomorrow. Thanks for helping her out with that travel stuff.
We love you all!
Mary
Mary,
Yes, it wouldn't have been good to have won at Operation, I wouldn't want to rattle Dr. Weiner's nerves!
It's been great having my mom here and she has been extremely helpful with the kids. It was a lot of fun to see Tori yesterday too, and Aria and Evan were so excited to hang out with her. Tori and I sat up way too late talking after everyone else went to bed and were up before dawn to get her to the airport. I'm glad it's Friday!
Lisa
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