Appointment #2- Part 1 (Nerosurgeon)

We had two appointments on Monday.  The first was with the neurosurgeon that could perform an endoscopic craniectomy and the second appointment was with a different pediatric cranial/facial reconstructive plastic surgeon then we had seen previously.  The two doctors partnered together to perform the surgery.  Through all my research this was what a majority of patients had, two doctors, not just one for either method of surgery. 

The reasoning behind the need of a neurosurgeon with the CVR method(first appointment) was to help ensure that the dura was not affected during the removal of the skull.  The dura is the thick outermost membrane matter that covers the brain and spinal cord.  I had asked if a neurosurgeon would be present during the first appointment but the doctor who performed the CVR surgery was a one man show.  He believed that he was capable of handling all aspects of the surgery.  Again, he had the numbers on his side and he had not had a complication.

But this was my baby. 

If I wanted a neurosurgeon present would one be available?  Again, the first doctor ensured and promised me that a neurosurgeon was not needed; he was capable of taking care of the brain during surgery.  I didn’t want to doubt him, but I wanted what was the very best for Cannon.   I could not fathom his brain being exposed for six hours without a neurosurgeon there, monitoring, checking, double checking and ensuring that his brain was not affected.

I needed a neurosurgeon.

We arrived at the neurosurgeon’s office.  Finally, it was our turn.  In came the neurosurgeon and I felt myself take a breath and hold it.  I didn’t know what was to come or what to think.  I was ready this time though.  I had researched and read, looked at pictures and asked lots of questions prior to even coming. 

I was ready.

The neurosurgeon was so very friendly and compassionate.  He asked us lots of questions as well.  Like, when we were told about his method of correction for craniosynostosis?  How did we find out about him?  When did we find out about Cannon’s craniosynostosis?  When had we made this appointment?  Due to the extreme manner of time sensitivity he wanted to make sure that his office had done it right.  They had it in the records that we had scheduled an appointment in early April but that had been for the first traumatic appointment, not this one.  He wanted to know what we already knew? 

Where to begin… 

I started talking.

I don’t really remember what I said but finally I had to know.  Was, would, could Cannon be a candidate for the type and way he performed surgery to correct his sagittal fusion?  Yes.  YES?!?!  Then that was good enough for me.  I was sold!  But we needed to make sure.

He explained, he performs his surgery was by drilling two to four burr holes into the skull and then making a connecting opening of an inch to an inch and a half.  (Meaning that Cannon would just have two one inch scars on the top of his head after everything healed! Oh, well and one from the drain that would need to be in place.)  From there he would use his endoscopic tools to go in and remove approximately a three inch strip from the front of the soft spot/forehead to the back of Cannon’s skull where the next set of cranial sutures are located.  The removed strip would contain the sagittal suture that is already prematurely fused together.  He might also have to remove strips on the sides of Cannon’s skull if needed, barrel staves.  This would be just to ensure that as the brain continued to grow it would have the necessary room needed.  Then basically, Cannon would have a three inch wide soft spot on the entire top side of his head and possibly on the sides of his head if those were needed. 
http://www.youtube.com/watch?v=7qvjXSx6sM8&lr=1&feature=mhum

Then the next part is amazing!  Cannon’s dura would then signal to his brain that it needed to grow new bone. So his dura and brain would work together to fill in the strip of bone missing by creating new bone growth.  This though created a need for a helmet.  Although his helmet would guide his new bone growth’s shape his brain would do a lot of the work by growing in a natural shape.  It would push his skull in the correct direction and expand as needed, which currently is impossible for Cannon due to his sagittal suture being fused.  The helmet will need to be worn for 23 hours a day for a year following surgery. 

This is often the catch for most people.  Correct or proper helmet wear/use is how the entire process becomes successful.  The reasoning is that otherwise the new bone growth would not, could not grow correctly and his head could then form itself incorrectly leading you right back to where we currently were. 

However, if there is one thing Cannon has taught me it has been dedication.  Through his stay in the NICU, through all of his struggles with nursing and having to pump and then feed around the clock, doing double duty, through his sinus struggles and current tummy troubles I had learned to be dedicated in a way that I never thought possible.  We talked in great depth about the procedure and the extreme time sensitivity importance of it all.  The doctor asked if we could do the procedure tomorrow and although my heart screamed yes because I was ready to be done, my mind said no.

This was the last week of school for both Chase and I.  We were not prepared for a hospital stay at this time and everything now seemed to be moving in light warp speed.  So much so that I needed a minute, an hour or maybe a day to process it all, to think it all through and we had yet to even meet with the other doctor that would be needed for the surgery. It had seemed like just yesterday that things were moving so very slow but now it was like a whirlwind taking over. 

I couldn’t breathe.

Upon explaining our situation he then said that perhaps the next coming week would work.  He was going to need to get everything scheduled though, so we agreed that yes this is what we thought was best for Cannon.  His scheduler would be calling us later that day or the following with the exact date. 

In the meantime, two nurses were ready to get Cannon’s pictures for the before and the hopefully soon after shots.  After the pictures were taken, we asked lots of questions.  We basically had an entire recap of the appointment.  I think we just wanted to make sure we understood EVERYTHING because now it was moving so fast I couldn’t keep up! 

My head hurt. 

Then my heart broke, how could I even think about my head hurting when it was Cannon’s head that needed my focus?