Riley's Surgical Change of Plans (taken from my Facebook page)

 Well, I arrived home an hour ago from being out-and-about all day. After coming in the door, I immediately sat down at the computer. I typed up half my update but while trying to copy it, I hit a wrong button and POOF! It was gone! Grrrr! I believe that's happened to everyone one time or another, so I don't have to tell you how aggravating it is!

  Ok. So we arrived at our appointment scheduled for 2pm. They lead us to a room where the nurse practitioner working with the surgeon, filled us in on what they had planned for our Riley. We had made this decision without knowing too many details. Just that we didn't have many options out there and it was necessary if we wanted Riley to develop normally in these vital first years of her life. We were also given the green light by our very trusted pediatric neurologist. Saying that it was a good idea and the sooner the better. So anyways, I had set a date to have this consultation with her surgical team a couple weeks ago. While we were on the phone, I hastily set a date for surgery because there was a spot open and we didn't know how long the waiting list was. Now you can see how little we knew and why we were so shocked to hear what they planned for our peanut!

  Back to the nurse practitioner in the small exam room..so we're sitting there and she fills us in that they are planning a hemispherectomy! That is where they remove half the brain!!!! Yes, my jaw dropped too! Here's a link http://www.epilepsy.com/epilepsy/hemispherectomy  which explains it in one paragraph pretty closely to how it was explained to us. They did specify cutting the connections to the other side of her brain which is supposed to eliminate the seizures. The success rate is 80 to 90%. So after hearing how they were planning on doing this (which is, by the way, the most severe of all brain surgeries or so the NP said) all my fear and anxiety came back. After talking to a brain surgery veteran at church on Sunday, I was so calm and at peace. After this little talk? Not so much!

 Ok it is seriously late, and my little bunny just went to sleep so I have to wrap this up and do the same. Bottom line, she (NP) explained and answered our overabundance of questions as best she could. (Riley would be in the NICU 3 to 4 days. Then to a monitoring unit for another 7. She would lose her peripheral vision..maybe more eyesight and most likely never drive. Her left hand would always be a "helper hand".) She left the room, and Galen and I just looked at each other and sighed. A little while later the surgeon himself came in. He was nice enough. Asked a lot of questions and then shared something we didn't know. Riley is 14lbs 8oz. She has at most 450 cc's of blood coursing through her body which is about half a Pepsi bottle. He went on to explain, he would easily lose all that blood during the surgery. He's had 0 fatalities on his operating table and he wants to keep it that way..(yeah we're 200% with you there, Doc!) So in conclusion, she needs to weigh at LEAST 20 lbs. The more weight the better. They fear blood loss, but also a major temperature drop. There was no needing to convince us! We will live with seizures for now over not having her living at all. Major duh! But I was soooo thankful for their attentiveness and honestly! That's one big reason I love Cleveland Clinic. They give you the pros and cons, their opinion and ask you yours, but in the end it's not about numbers or money, it's about the patient!

 I also have not shared with you that Riley has been seizure free for 6 days!!! That's huge! Her last time was coming out of the hospital after her first stay in Jan. She was SF for 9 days. So lets see if we can beat that! They did just change her meds up a week ago which is why we're having this reprieve. But I'm going to be positive and relish it!!!
  So our plan with her surgical team is to hold off if posiible till July. Then instead of the hemispherectomy, start with something smaller. Simply removing that lesion on her right brain and see if that takes care of them for awhile. There's always the possibilty of more surgeries down the road. But due to Riley's age and weight we need to proceed with the utmost caution. So that about sums it up. If her seizures get out of control like January then we'll have no choice but to schedule a surgery and pray for the best. But we can thank God because at the time, they're not life-threatening and she doesn't spend a lot of time in the hospital.

 Alright this mama's signing off. I have that feeling I forgot something. Oh well ..ask questions if you have them, maybe I'll remember. So bottom line, it's not a "no" for surgery, just a "not now''. July will be here before we know it but in the meantime I will enjoy my daughter's huge smiles, giggles, and growing hair!!! Love, Love, LOVE you my dearies! Good night and as always THANK YOU!