Today was the big day. The VNS has landed. And looking back on my facebook status updates, I used the word "Super" to describe a lot of things so I've already established a theme and I'm going with it.
If you're wondering what the heck a VNS implant is, the best definition was given by the super gifted neurosurgeon: "A VNS is like a pacemaker for the brain." - Dr. Wainand
He explained that just like a traditional pacemaker regulates the patterns of the heart and helps it work, a VNS implant helps regulate the brain and control seizure activity.
Super Smooth Pre-Op:
We arrived at 7:30AM for check in and surgery was scheduled for 9AM. We were also shown a huge TV screen with codes and each code represented a patient. As the patients moved from pre-op to the OR to the post-op, we would be able to track where exactly Christian was and at what time.
We took Christian back to pre-op and changed him into a kid-size hospital gown and tucked him comfortably into the big hospital bed.
Super Freaked Out:
After going over information about the procedure, I was informed for the first time that Christian would be intubated, which means a tube would be inserted down his throat to help him breath.
Intubated? Nobody had even mentioned that until right before the surgery. The reasoning was that because Christian still refluxes and throws up an intubation would help protect his airway. I still wasn't exactly happy about this. In the long run I wasn't surprised. This particular hospital is the same hospital that has a trache happy track record (this is where Christian got his) and they tend to be overly cautious, which isn't a bad thing. I just felt a little blindsided, that's all.
Super Man Departs:
It was finally time to say goodbye to Christian. There is something about saying goodbye to your child before he is wheeled into surgery that kicks you right in the stomach. I kissed him about ten times all over his face, but especially in my favorite spot. It's the spot right above the corners of his mouth where the cheek meets the nose. Then I watched his little blond head as the doctors wheeled him down the hall. I could have lost it right then and there.
Super Man Arrives:
After about an hour and a half, Christian was done! It was really quick! We were able to go back and see him and I was surprised by how awake and alert he was. He was moving around, whining a little, and his eyes werewide like saucers. He was already extubated and did great through the whole surgery without any hiccups.
Super Anxious To Get Home:
We finally were able to go home by around noon. Christian was hungry! He hadn't eaten anything since the night before so we had to get him home so I could make him a special blend that would be easy on his tummy.
By the time we got home Christian was red faced and a little overheated. And, although he did well on the car ride, he was pretty pissed by the time we were inside and all settled. I think it was a mixture of fatigue, hunger, and discomfort. But he cried for about two hours straight. Tylenol with Codeine cocktails were administered and that seemed to help but I seriously thought this might be our household for the next few days. I was worn out after the first hour of crying.
Super Sitting Up:
Because nothing else was working, I finally just sat Christian in his tumble form chair to see if he'd rather sit up. And whaddya know, it did the trick! He was finally comfortable enough to fall asleep right there sitting up for the next hour.
Super Man Is Doing Well:
Christian has been minimally agitated and he's tolerating food well. He's got an incision on his neck and an incision under his collar bone so we're very careful to guard that area for him. He's resting peacefully right now and has been for a few hours. The device has already been turned on to it's lowest settings. It will be officially programmed to probably a higher setting in the next few weeks.
I'm so grateful for all the thoughts, prayers, and messages that have been sent to us today! Christian is so lucky to have so many people on his team rooting for him and we are so lucky to have the support we do from our family and friends.
With every surgery there is risk. And in getting ready for the surgery, no matter how positive I was, my mind would still go to that dark and scary place of what if. So it makes it all the more relieving that Christian did so well and he's here, peaceful and breathing softly in dreamland. I'm hopeful that this device helps him to progress and we are so blessed to have this opportunity for Christian, but right now I'm just happy and content that my whole family is under our roof and not spending the night in a hospital. And that's super fantastic.
March for Science
6 hours ago