Connor's Surgery

Many people have asked me what Connors surgery will be like. When Dr. Woo came in and told Andrew and I that Connor was going to have to have surgery I was not expecting what he told us. He started off by saying we are going to make a zig zag cut from ear to ear. That is when I stopped. I could not listen anymore. The only thing I focused on was Connor sleeping on me. Everyday since his surgery I have just been rubbing and kissing his blonde-almost white hair. They are going to have to shave it for the surgery. That is not how I pictured his first haircut going at all.

This next paragraph may be a bit graphic so if you don't want to read it, I don't blame you. After hearing news of the diagnosis being confirmed I somewhat blacked out so I am going to have Andrew type the rest, I believe it was my brains way of coping.

The surgery will consist of the team cutting his scalp from ear to ear over the top of his head in a zig zag pattern kind of like a head band. They use a zig zag pattern to minimize any blatant visible scaring once the hair returns (amazing the difference in comparison photos). Once the incision is made his skull is exposed from the mid crown and his scalp is then rolled back towards his neck so the team can have full access to the entire back of his skull. With careful cutting and a close watch from the neurosurgeon, Dr. Woo will remove the back of his skull completely. From that point he will manipulate the shape by re opening the bone fusion and carefully separating the skull into multiple pieces, it is then all re-attached by means of tiny plates and screws that can dissolve throughout the healing process (we had no idea that stuff existed!). His head will be reconstructed entirely in the back in what is termed a TCVR or total cranial vault reconstruction and the entire process can take anywhere from 3-5 hours permitting there are no complications throughout the surgery. We have the upmost confidence in this team as they are ranked 2nd in the nation behind Boston. The specialist team has performed over 500 cases with similar surgery all without any major complications, and no children with extended recovery time. Post-op he will be in the PICU for at least 24 hours, his head will swell considerably to the point where he may be nearly unrecognizable. He will then need to be transferred to recovery for the remainder of our visit where we will be educated on pain management and wound care. It will be the start of a tough road for our little guy but hopefully with a little luck and alot of prayer it will be the beginning of an end for his cranial issues!!

So that is how his surgery will go. I have been having bad dreams and just feeling nauseous with worry.  I've been keeping myself busy with things like cleaning, working out and laundry, when Connor is sleeping. When Connor is awake we play. Since we have had nice weather we have been outside, Connor LOVES being outside! I think my neighbors think I am nuts because I carry Connor on my hip down the street, because he hates his stroller! So I carry him and its fun for him and a workout for me! :) The thought of the worst that could happen has crossed my mind more than once. I know that I should not think like that, but I cant help it. The last few nights Connor has woken up upset, I have been rocking him back to sleep and rubbing his head, because I know that in a few weeks its not going to be that easy. I am most worried about bringing him back home. He is really on the move now and just wants to climb and he bumps his head on everything!  Andrew is taking a week and a half off work, I am so thankful for that. I know its not going to be easy, but with him home it will help so much!

Thank you again to everyone with all of the prayers and support and donations. I can't even explain how happy it makes me!

Connor is officially walking!