Friday, May 17, 2013

Post Surgery Update

So we were reunited with our little man earlier then expected yesterday around 6:30 in the evening. His surgeon let us know that they took more then they had planned for but were very pleased overall with the surgery. Once they had the electrodes on the brain during the surgery (the doctors called it ECoG which they do in order to distinguish exactly what is "bad" brain and what is "good" before they resect) they found that, once again, my baby boy was constantly being disrupted by seizures. He told us it was firing off so much that within five seconds of having them on they had enough information to remove and it would have been the same outcome if the would have decided to do the IEEG (the few days of Intercranial monitoring) so thank goodness he chose not to go that route. I will say though I am totally heartbroken that this has went on for as long as it has and that these seizures have been constantly wrecking havoc inside my little baby's brain since his birth. What was so difficult with that most of the seizures he was having were not physically seen by us but was developmentally destroying and holding PJ back. How he is with us today and how he continued to make tiny steps developmentally is nothing short of a miracle. Overall though he did very well in surgery and once he came out the nurse told me he said "owieee" and she asked if his head hurt and he quickly responded with "yeah" this brought me to tears....he has never responded quickly and correctly to questions and he did with her! He is slow to move his left leg but he is moving his left arm pretty well. It will take a little bit to see how he will be as far as weakness and function go. Oh, most importantly...and encouragingly, PJ had his first ever clean EEG reading (from the ECoG) after the "bad" brain was removed...AMAZING! :)   Now we set back enjoy time with our little boy we have never really met and pray that the dysplasia was all successfully removed. Thank you to all our friends and family for your unwavering support, love, and means so very much to us!! We will update as PJ wakes up...


  1. Hi Marcie,

    I am so glad to hear surgery is underway. I read PJ's posts on FB and know it is complete with success. Savanna was very, very similar. IEEG was not necessary in her case either.

    Reading your updates and fb posts was like a breath of fresh air for our family and, we know a bit about how you feel too. Please know we are praying for your family.


  2. Thank you Ken!! :-)

    Isn't it strange that they can have so many seizures, even at a pretty much constant rate, and people be totally unaware of them!? I was in shock that things were so bad but it really explained a lot with all of the deleys and behavior and visable seizures increasing. I hope that Savanna is well...we think of yall often! Thank you for the prayers and we also pray for your family...hopefully soon we can all began to breath a little easier!