The brain surgery deets

Well first off Happy Election day! 
I am so thankful to live in a country where there is freedom and democracy.
And that is all I am going to say about that!
Now a little break from election coverage to hear about brain surgery!

People have been asking me a lot about Emmaus' upcoming surgery. It is 9 (SINGLE DIGITS) days away. Which is very crazy- and nerve wracking.
So here are some details

What is she having done?
     She is having a left frontal tuberectomy. Meaning they are taking a tuber out of her left frontal lobe. It is the tuber that caused 37/38 seizures she had while she was hooked up to the EEG machine

How long is the surgery?
     We previously thought it was longer however we are very relieved that it is only a 4 hour surgery- 

Will they shave her head?
     They will only shave where they are doing the incision so besides the incision her sweet little hair should stay on her sweet little head.

So what will the incision look like?
    The incision will start behind her hair line on the left side and go straight back to her ear and curl around in front of her ear- kind of like a question mark

How long will she be in the hospital?
    Emmaus will be in the ICU for one night- barring any complications. Our total hospital stay will probably be around 4 days.

Will she have a lot of pain?
    A friend told me the other day that for their family this surgery was way harder on them as parents than on their child. If I have learned anything working as a pediatric nurse it is that children are resilient.   And generally do much better than the adults with them!

What will the surgery accomplish?
     Well that is yet to be seen- but we are hoping with better seizure control more development will happen. She is in the midst of a developmental spurt at the moment and it is so very fun and exciting. We are very hopeful that more development will come after surgery.

Do you have other questions?! Please feel free to ask. I will be blogging during our surgery journey. We are so glad to be sharing our story. To be living life out loud. We are hopeful Emmaus will have great results from this surgery. We are realistic and understand surgery is not a "cure all" for Tuberous Sclerosis- but we are hopeful non the less.



  1. I wish you the best! My 7.5 month old son had it at 4 months and his motor skills picked up dramatically within a week. He handled brain surgery better than I handle a headache :)

  2. Our question: Do you need anything? We'll of course be praying. And we'll have people pray. But are there physical needs you'll have during this time?

  3. Children certainly are resilient. I hope everything goes smoothly for your sweet little girls surgery!


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