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.

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!

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!

Insomnia

Ever hang out with a 3-year-old with insomnia? You haven't lived until you have!

We've been in the middle of a medication switch -- off Depakote and onto Klonopin. Depakote has a side effect of blood-clotting, so Evan has to be off that one prior to surgery. The docs don't want to leave him vulnerable to more seizures than he's already having so we're introducing Klonopin. Klonopin normally wipes people out, but sometimes it induces insomnia, which is what we're seeing in Evan.

Just to add something else into the mix, the Topamax Evan is taking is making him aggressive. This is the second drug Evan has been on that has induced this lovely side effect.

So, our house has been interesting lately to say the least. Although it drives us a little crazy to have Evan repeatedly get out of bed at night, the up side is that he's really funny about it. He comes out of his room to sing us a song, tell us he forgot to say how much he loves us, complain about his pajamas as he stands naked in the doorway, or simply give an animated roar. He has surpassed the old "I'm thirsty" technique for getting to stay up later and moved onto more sophisticated methods!

We talked to Dr. LaJoie, who switched his meds around a bit, so we're hopeful that it will help....soon!

Tonight Evan came up with a completely new idea to avoid sleeping. He appeared in the family room doorway, naked, and complained that his bed was wet. Oh, and he was a little wet too. My thought..."uh oh". So, yes, he took his clothes off and peed in his bed. But Evan is much more creative than that. There was a plastic container in his room, so he put that on his bed, stood on the mattress and tried (with moderate success) to pee into it.

Adults with insomnia? Boring.