Craniotomy for Optic Nerve Decompression

Craniotomy for Optic Nerve Decompression

The night before surgery TD and Brie joined us in Gainesville around 6:30 pm. We all went to eat at Cracker Barrel and had dessert at Ben and Jerry's Ice Cream per Jacob's request. We got back to the hotel and each started to prepare for the next day, the big day. Jacob's surgery was almost here.


Jacob was really nervous most of the evening and night. (We were all nervous) I washed his hair with the special shampoo we were given and we watched baseball as late as we could. Jacob cried because he was scared and I tried to comfort him with hugs, kisses and reassurance that everything would be fine. It seemed like Jacob got up 15 times during the night to use the restroom. He complained about stomach cramps and jitters in his tummy. Finally around 2:00 am Jacob fell asleep. Gavin slept most of the night in his pack n play, only waking up once - I felt like I didn't sleep at all.


TD, Jacob, Brie, Gavin and I got to the hospital at 9:00 am.


The rest of Jacob's family started getting to the hospital around 10:15 am.

Thank you to Granma Gina, Pops Dana, Heather, Josh and Presley for being there for us on surgery day.

Jacob's dad, his wife and GG and Papa Billy were also at the hospital for the day.

The "surgery phone line" informed us that we needed to be at the hospital at 9:00 am and that Jacob's surgery would be around an hour and a half later. I knew after meeting with Dr. Pincus the day before that Jacob was Dr. Pincus' 2nd case and he didn't expect to start with Jacob until around noon.

They called Jacob at 1:00 pm to go upstairs to be prepped for surgery.

Jacob headed to pre-op. Jacob held my hand as we walked. I just kept thinking how brave Jacob is and how unfair this all seems. I prayed over and over in my head for God to be with Jacob and his surgeons. In pre-op we met several anesthesiologists and one of the nurses who would be in the room with Jacob during surgery. Jacob explained to the doctors that he wanted his IV placed first and did not want to be put to sleep with the anesthesia mask. He also requested that the instruments in the OR be covered up before he entered. He remembered seeing the tools last surgery and they frightened him. The anesthesia doctor who tried to place the IV the 1st time failed miserably. Jacob was mad and ready to go home. After the way he dug around in Jacob's arm...I would of been ready to go home too, but what's the big deal of getting an IV compared to a craniotomy? Another doctor came in and put Jacob's IV in very easily. Thank goodness. Jacob was given Verset and started to fall asleep. I told him how much I love him and walked away before he could see my melt down. Jacob went to the OR at 2:10 pm and I went to the chapel to pray.


We waited.


At 4:30 pm the nurse called and spoke with Jacob's dad and said Jacob was doing very well. She said she would call again with another update around 6:30 pm. We didn't hear from the nurse again, but Dr. Pincus came down about 7:15 pm. He said Jacob did very well. He said the surgery went just as it was supposed to go. Dr. Pincus said the appearance of the optic nerve changed immediately after they did the decompression. The nerve went from "a very unhappy nerve to a happy nerve." Dr. Pincus said that him and Dr. Lewis were both very happy with the surgery. He said Jacob was being stitched up and that we wouldn't know about Jacob's vision until he woke up and went to PICU.

At 8:30 pm I finally was able to see my baby in PICU. He looked beautiful and precious. He was peacefully sleeping. Jacob's nurse was hooking up wires and attaching his monitors. I asked her if he had woken up or said anything since he was brought in from the OR. She said that Jacob's doctors had been there and talked to him - she said they had done a vision field test using their fingers......she said Jacob had passed the test. I looked at her and said, "So Jacob can see? He can see? He passed the vision test?" She said, "Yes!!" I can not describe the feelings of joy that came over me, the relief. Answered Prayers! Just to be able to kiss Jacob's hand and to see him breathing steady was priceless, much less to know he could/can see. That was a moment I will remember forever. TD and Brie came in to see Jacob with the same reaction. Tears of joy. Tears of relief. Tears of happiness.


Heather and Josh came in and saw Jacob briefly before they went back home to St. Pete. Jacob woke up for a few minutes to tell them goodbye and asked Heather how Presley, her 4 month old daughter was doing. Even after waking up from major surgery Jacob was thinking of others before himself.


Jacob's dad came in and saw him briefly.

I was able to bring Gavin in for about an hour before TD and Brie took him back to the hotel. It was so comforting to have all of my family together and to surround each other and Jacob with our combined love.


Surgery night was rough. Jacob was very sick to his stomach and in a lot of pain. Jacob had a hard time opening his eye so he was also scared. He dry heaved in the beginning which made his head hurt and his incision bleed. Later after drinking water he threw that up several times. I'm not sure if it was the Morphine or the anesthesia that made him sick, but the Zofran controlled his nausea later. Jacob slept a lot and when he was awake we listened to football on ESPN and talked about the games from that night. Most of the night and early morning I sat and held Jacob's hand because he was very scared. Around 5 am TD (thank you for being an awesome husband and step father!!!) came and sat with Jacob and I went to the hotel to be with Gavin and Brie and to sleep a bit.


Surgery day was over and Jacob was doing as best as could be expected.

Strong and Brave.