Starting Over: Surgery #2 Report

Hello all. Thank you for "being with us" today. Avery did very well insurgery today. Many prayers were answered on that front for sure. She was put asleep at 8:15 this morning with me by her side, and she was wheeled out of the operating room to the PICU at 6:45 this evening. It was a long day, but a good one. Overall, the surgery went very well. Avery had only a little bleeding and her stats remained stable the entire time. We saw her as she was being wheeled to the PICU. She looked really good considering what had been done to her. Thay had her head bandaged this time...which was good for me. I needed to see her doing well before I saw the incisions this time. Today was just harder for me than the first surgery day was. She, however, has amazed us with her strength! She is one tough cookie...even the doctors think so. A true gift from God. Dr. Kossoff and other team members kept us informed throughout the day. At one point Dr. Kossoff came out to talk to us and told us that he had pics if we wanted to see. Jon said "sure" right away...I was curious but still quite leery. So, I looked but at a distance that I felt would not really allow me to see detail. That was fine, until he actually played a video clip from the surgery. That got to me and I had to turn away...mostly because it showed the actual removal of the parietal lobe. I guess I'm just not ready to see that yet...maybe someday when she is sitting in the other room safe, sound, happy, and healed. Sometimes it is hard for me to wrap my mind around what I know is true and what I still "feel" that is in contridiction to what is known. The anatomical hemispherectomy had always been harder for me to think about because it is the actual removal of the tissue, not merely the disconnection of it. Even though the end result it the same (or should be in theory), it still seems "worse" to me because it removes part of the body. The surgery could not be called perfect, because Dr. Jallo had to leave about 20% of the tissue behind due to some very abnoramlly large blood vessels in two regions of the left hemisphere, but was a success. It was a very large bleed out risk that he was not willing to take (and, we are quite happy about that). He did everything possible though to disconnect (actually doing a sort of 2-level disconnect) those tisses from the rest of the brain and neuro-pathways to the body. Dr. Kossoff told us that there actually appeared to be a part of the corpus callossum that was not quite fully disconnected as thought to be from before, which potentially could explain the continued seizures following the first surgery. So, this surgery should by all accounts be a success, but of course they can not guarantee us anything. They simply say that they feel good about it and that will have to wait and see. We are doing that and are continuing to pray that God will not allow the seizures to return. He certainly answered all our prayers today by keeping her safe and stable in that operating room. What a fantastic anniversary gift! She is resting peacefully now in the PICU. Since she will be very sedated and out tonight, we are all taking the opportunity to get some much needed rest. Avery only slept 2 hours last night before the surgery...so I also only slept 2 hours and then was up waiting all day today of course. I am finally, utterly exhausted right now. Please keep the prayers up. Pray that this is the start of an incredible journey for Avery...one that we all get to be witness to. One that fully fulfills all our previous and current prayers. Thanks be to God! Holly