Neurosurgeon Appointment

We had our appointment with the neurosurgeon on 9/23/13.  Mason's Neurosurgeon is Dr. David Wrubel with CHOA.  He is a wonderful and nice man, and we felt very comfortable with him.  You can read more about him here http://www.choa.org/childrens-hospital-services/neurosciences/programs-and-services/neurosurgery/meet-the-team/david-m-wrubel and here http://www.emoryhealthcare.org/neurosurgery/surgeons/david-wrubel.html .

We were prepared to have to wait a long time upon arriving for our appointment, but didn't have to at all - it was very nice!  I filled out a little bit of paperwork and we were quickly directed back to a room where a sweet nurse met with us first.  She asked us questions regarding my delivery, why we thought he needed to be seen, etc..  I love how much all of the CHOA employees love children and babies - it makes this process a little easier to bear.

Dr. Wrubel came in and introduced himself to us and examined Mason's head.  He was very sweet and gentle with Mason, and told us that he has a 1 yearold daughter himself.  For some reason, that makes me feel more at ease... I know that he knows how it feels to love your child and be worried about them.  I think it is one of the things that made me feel more comfortable with him.

When we got down to talking about "business", he confirmed what we already knew from our research and intuition - Mason has Sagittal Craniosynostosis.  He told us that he was going to pretend that we didn't know anything about it from researching or that this was his diagnosis, so that he could give us all of the information and not miss anything.  He explained what it is, how it effects Mason, that he has to have surgery to correct it, etc..  He was very thorough and comforting throughout it all.  I was very surprised at how well I took the confirmation of the diagnosis - I had prepared myself for ove 2 weeks to hear those words, and my heart already knew what we were going to be told.  It doesn't make any of this any easier, especially the idea of my baby being operated on and being in pain.  Sometimes this whole situation feels so surreal and I wish it was just a bad dream.

The most surprising and nerve-wracking part of the entire conversation, was when we started talking about the surgery.  We went into the appoinment thinking that Mason would be a candidate for the less invasive "Strip Craniectomy" since it was likely that he only had the sagittal suture fused and since he is less than 3 months old.  We were praying for that surgery because it is less invasive, has less risks, less swelling, less blood loss, shorter hospital stay, etc..  I guess I never thought that he wouldn't be a candidate for that surgery.

Dr. Wrubel feels that Mason needs the full "Open Craniectomy".  It is a big, serious surgery, and scares me to death. The hospital stay is longer, there are more risks, recovery is longer, he will likely need a blood transfusion during surgery, there is more swelling, etc..  The surgery itself is about 4-5 hours and consists of removing parts of the skull, reconstructing it, and putting it together with dissolvable screws and stitches.  In his words, Mason's head isn't the worst he has seen, but it is very noticeably misshapen and obvious.  In order to achieve the roundness of a normal skull shape and allow the brain to expand and grow, he doesn't feel the strip craniectomy would work.  The one "positive" to the full vs. strip, is that Mason won't have to wear the restructuring helmet that goes along with the strip craniectomy (the helmet is very different than the ones you see some babies wear who have flat spots on their head).  We have to trust that the doctor knows best, and that this is what Mason needs.

Seeing the CT scan was pretty neat.  We are going to get a copy of it and will try to post it if we can.  It was cool to see the 3D image of everything and be able to physically see the problems with his skull.  It was crazy to see that suture completely fused and closed compared to what it should look like.  The positive thing about the CT scan, is that his brain looks really good right now - please pray it stays that way.

We don't have a set surgery date yet.  Dr. Wrubel said that they might wait until Mason is 4-6 months old.  This is so that his bone can thicken prior to surgery so that it can be shaped correctly.  According to the CT scan, Mason's bone is a little thinner than they like to see it be for surgery to begin with.  As hard as it might be to wait, I actually feel slightly better knowing he will be a little bigger and stronger for the surgery.  I pray that he will handle the surgery better since he will be older.

The next step is to meet with the partnering plastic surgeon that does the surgery with Dr. Wrubel.  Apparently, he is the one that determines when the surgery happens.  We have an appointment with him on Wednesday at 9:00am.  As much as I dread the surgery and wish it didn't have to happen, I am ready to know a date so we can prepare for it mentally, emotionally, and financially.

Please continue to pray for sweet Mason.  Please pray that his body continues to grow and strengthen to handle the surgery, that his brain continues to be healthy and not be effected by the Craniosynostosis, that the surgeons are led to perform this surgery to the very very best of their abilities, that Mason won't be in pain and have a lot of blood loss, and that his healing is fast.  Please also pray for Clay and me - as you can imagine, this is very hard to grasp and go through as parents.  There aren't many moments that go by that I don't think about and worry about the surgery.  Sometimes I wish I wasn't so tender hearted and sensitive.  I can't help but think how unfair it is that this happened to Mason.  Its unfair that these things happen to any sweet, innocent children.  I know and have to remember that God is the ultimate healer, and that He is in control.

Here are 2 Bible verse that I have tried to remember lately:

Isaiah 43: 2 

"When you go through deep waters and great trouble, I will be with you. When you go through rivers of difficulty, you will not drown! When you walk through the fire of oppression, you will not be burned up- The flames will not consume you."

and

Philippians 4:6-7 

“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”