Jake made it through

Bilateral craniotomy with frontal and orbital advancement with bone grafts.  As scary as that sounds its even scarier when its explained to you by dr.'s who then perform it on your 8 month old.    

We started early today arriving at Cedar's at 5:15.  After the paperwork, pre-op evaluations we turned Jake over to the Dr.'s at 7:30 and nervously trudged to the waiting area.  It is not easy to hand over your son knowing what he is about to face.  In basic terms, they were reconstructing his skull to allow the brain to grow.  

We sat around waiting for the first call to let us know that surgery had begun.  It takes a while to prep all the anesthesia tubes etc. and the surgery didn't start till around 9:30.  Around 12, Dr. Danielpour, jake's neurosurgeon, came out to let us know the surgery was going well but they did have to repair a tear in his dura, which is the lining that protects the brain.  We were warned this often happens and in many apert cases multiple tears.  Jake escaped with the one that was fixed immediately in the OR as the craniofacial team led by Dr. Urata began the reconstruction.   All day we waited nervously but comforted by family.  Around 2:30, Dr. Urata came out to let us know Jake was fine and the surgery was completed.  The surgery went well and they really overcorrected the forehead to allow for the brain to grow.  With a lack of the better word, they describe it as "frankenstein-esque".  Jake didn't really have a forehead before and now he will have a prominent one square in nature that will take a few months to round itself out.  Jake didn't have as much bone as they would like making the construction a bit tougher. Similar to a mosaic technique, they craftily worked to put his skull together in its new form.  Slightly less tall and more far forward.  In time Jake will regenerate bone to fill in some open spaces for added protection but his head is very delicate for now.  

Then came the warnings of what we were about to see.   We were warned about the prominence of the forward adjustment and that his eyes will be sewn shut for a few days.  Over the next two days Jake's head will swell so much that his head will grow to a very scary size.  To protect against the eyelids turning over and in some cases eyeballs popping forward, they sew the eyes shut.  As you can guess all of this takes our total mental reserve to process and get through.  

Needless to say we were scared to join Jake in his ICU room and it was slightly shocking at first.  His face has taken a different form some of that distortion temporary swelling and some the overcorrection that will assimilate in a few months.  His eyes are shut and that's a tough sight for any parent to see their baby look so pale, so swollen and whimpering a sad sad cry.   

We have been with Jake all evening and Sam will stay the night with him.  He is on a drip to ease his pain and we just fed him a little apple juice that he gobbled up.  The Dr.'s do tell us the moaning is a medicated state and he isn't awake to feel the pain but somehow that doesn't make it any easier.   

We are so relieved to be back with our little boy but today and the next few days are extremely tough for us to get through as we just want to alleviate any pain from our poor little guy.   It seems unfair how much he has been through in his eight short months but he's a tough guy and we get through these times knowing that all of these surgeries are steps in helping him get better.  

Say a prayer for Jake for a speedy recovery and wish us well as we are scared about this swelling of the head we have been warned so much about. 

Thanks to everyone who has reached out with their thoughts and prayers.  

Lance & Sam