Prayers Answered!

Back to Tarheel Country where all this began 2 years ago TODAY:

First we met with sweet Carolyn Zook, the NP we've all been praying would be receptive and on the ball. She was both! Thank you, Lord! She happened to be a great listener, and engaged really well with Oliver. She promptly realized she needed a doctor to come and meet with us. She called a Dr. Elkay right on in from lecturing to meet with us while we were there. I loved that! 

Dr. Elkay was in with us for about 5 minutes. She was all business and very confident. She wasn't touchy-feely at all, but I'm ok with that. I'm past that point where I need things sugar coated or presented softly. Just give it to me straight. Two years ago it would have all been too new, too raw; but now hearing his EEG is "very abnormal" hardly makes me flinch. I have to say I wasn't expecting to meet with any of the doctors, so this was a pleasant surprise. Dr. Elkay said she would be happy to be our "local" contact, and follow Boston's directives related to Oliver's care. That, my friends, was music to my ears! It also happens that Dr.Elkay read the ambulatory EEG Oliver had this winter. That is a God thing, if you ask me. That she read the EEG, and she happened to be available on a day she wouldn't normally be, and she is one of the neurologists that comes to Wilmington, etc...
The next step is to wait to hear from the neurosurgeon about an appointment to meet with him. We'll have to hoof it back to UNC for this. The nurse is on vacation this week so it will be Monday before we hear from her. They are optimistic we can get all of this done quickly! At that appointment with the neurosurgeon we'll schedule the surgery to implant the VNS device. On the same day we meet the neurosurgeon we'll follow up with Carolyn and/or Dr.Elkay.
Thank you for your prayers and encouragement. It was an emotional day for so many reasons, but God has shown His provision and love to us so clearly today! My heart feels less frantic tonight, and that is a gift this mama desperately needed. 

Dr.Elkay did her pediatric epilepsy residency at Boston Childrens', so I am sure she is somewhat familiar with TSC. I think they have a TS clinic there? We didn't have time to talk about it, but I plan to ask next time. She is relatively new to UNC, so we never saw her when we were there in 2010. Not sure that I could have handled her "direct" style back then, but now I appreciate it. 

Due to our shockingly bad communication issues with Duke, I wanted to make sure they were good with follow up. I ask in detail how I was supposed to contact them, how long it would take for them to respond, etc... Everyone at UNC emails (Hallelujiah!), and they usually answer within hours; worst case scenario 24 hours. The NP gave me her email address and said unless she is out of town she is able to filter through email questions within a few hours. They both were shocked at our Duke experience, and Dr.Elkay was confident that we would not have the same communication issues at UNC. Only time will tell....

They want us to stay where we are with meds for now until we get a better idea of the VNS surgery date. On the short term, this works for us. Among other things, it gives us time to get all the records from Mass General down to them for review. 

On a scale from 1-10, I'd say it was an 8! I am cautiously optimistic that we might have finally found a dynamic duo in the same galaxy as Dr.Thiele and Jan. Notice I didn't even say the same ballpark. They have a lot farther to go to get that kind of compliment! 

PS...Many thanks to our neighbor Judy for being my smiling helper! She endured with ease the loud shrieks of our angry toddler for many an hour. The woman is unflappable! She even drove home while I worked on a real estate negotiation in the back seat while balancing my iPad on my lap. I briefly felt like Oprah Winfrey with a driver and all....and then Oliver threw a book at my face and yelled "Read!", and I was forced back to reality. 

PPS... Only a few tiny seizures today :-)