cranio part 2

There was something I forgot to write about and that was our decision whether or not to have Calvin operated on. Initially when we found out Calvin had craniosynostosis we were not sure whether or not we should operate on him. The operation, though not life threatening and super dangerous still had risks such as the risks with general anesthesia, bleeding, brain damage or in worst case even death. And because the surgery is cosmetic we wondered if it was really necessary. We also wondered what a craniosynostosis adult would look like if they don't get the operation (called cranial vault Reconstruction) done as a baby. These questions weren't fully answered butt as far as we could tell from our research it was the best and most accepted treatment.

There was actually a woman in our ward at the time, who had had the cranial vault reconstruction as a baby over 20 years earlier. She let us feel her head (not perfectly round) and assured us she had turned out fine! It was nice seeing her. She had a different suture that had been sealed than Calvin's so her deformation was on the skull only, not her face. Her scar was not visible at all thanks to some beautiful thick hair.

okay, now back to the story :

The preparation for surgery wasn't too bad. We had several Dr. appointments to make sure things were all okay. The surgery was to be about 5 hours start to finish and would be performed by the neurosurgeon (who does the opening of the skull just in case there is any problem) and the cranial-facial surgeon who does the majority of the case -- opening up the skull so that there is a suture line and also restructuring the brow and skull. We learned that the scar would run from ear to ear across the top of the head and would zig-zag to help hide the scar in the hair. We were prepared for a week long hospital stay after the surgery and made arrangements to stay at the Ronald McDonald house adjacent to the hospital. Dave's mom made plans to come out and help so that the baby would never need to be left alone in the hospital (and dave couldn't stay in Cleveland and miss a full week of medical school).

Babies bleed a lot during the surgery and require a blood transfusion during the operation. We decided to do a directed donation from myself to Calvin. I remember getting the paperwork for this was a pain, but it worked out eventually. Those of you who know I am a huge weenie when it comes to all things bloody know that this was a sacrifice for me. I had previously passed out at the dentist office where I was not even the patient, in my lab when I sliced my thumb, and while serving as moral support for a friend who was draining a bloody fingernail. I don't like to see blood!!

One of the things that I was worried about was the fact that Calvin had to be fasted for his surgery. He was still waking up in the night occasionally to nurse and always ate first thing in the morning and he would not be able to do either. Everything worked out well for us though. I woke him up and fed him at around 10 or midnight to feed him knowing that he wouldn't be able to eat again before surgery. When he got up in the morning we got ready and left quickly and once we were at the hospital there was enough commotion to keep him busy and occupied so he never reached that point of being hungry and inconsolable. This was a tender mercy. I thought for sure he'd be screaming while we waited for surgery to begin. They always give the littlest patients the earliest start so that they don't have to fast as long during the day. We had to be there around 6 or 6:30am.

Everything went very smoothly the day before (check-in, blood work and leading up to the operation). I was thankful.

The operation went well too.

to be continued...

*You may be wondering why the heck I'm writing this all out now.....there are 2 reasons. First, I thought it would be good to have for future reference. Second, our craniosynostosis story continues today so in order to be current with everything that is going on now, some background is necessary.

**That being said, this story will be many parts. Some of you, maybe even all of you will die of boredom before it's over, but I want to get it all out here.

***I don't have any digital pictures to add. I don't have a scanner so I need to figure out how to digitalize some of my old pics and add those to the story at some point.