Cranio Surgery during Covid-19

The time we knew would come has come and it has come at a very inconvenient time!

THE FACTS: 
So, one of the deals with Apert Syndrome is that well, it's a syndrome, which is kind of like a gift that keeps on giving...  If you're newer to our family or have never really known what or how to ask about Nathan there's a quick synopsis on one of the other tabs of this super fancy blog;)  (BTW, any questions that asked respectfully are welcome and encouraged by our family at any time!)

Nathan's body is like a bone-making-factory, only it creates bones at speeds and shapes that effect him in pretty serious ways.  One area that's dramatically effected is his skull.  Essentially, the way the bones fuse in Nathan's skull make it impossible for his brain to grow in a safe and healthy way without major surgical intervention.  And because it's a syndrome, it's not one-and-done surgery.    Here are a few pics from the last time he had surgery on his skull when he was 15 months old.

We get sleep studies, MRI's, and other consults on the regular to monitor his needs and this past February when we met with his specialist the results of his MRI and over 100 measurements of his skull all indicated that now is the time for him to have this surgery again.  The MRI revealed that there is too much pressure around his brain and it needs to be alleviated.  Like I said, we knew that this day would come.  We knew it.  And yet, it's a pretty hard feeling to be sitting in an office and hearing that there's pressure around your son's brain and that a major surgery is needed.

Surgery will be this Wednesday, May 20th in Dallas.  As of now, it's scheduled for 1pm.

THE FEELINGS:
This is a hard one.  Although he's had over a dozen surgeries and tons more of procedures, studies, scopes, scans, etc. this is a hard one for many reasons.

  - The nature of the surgery.  Last time he had this surgery, it was explained to us in this way...  During this surgery, a cut will be made from ear to ear along Nathan's scalp.  The doctors will then separate (think peel) the skin off of the bone of his skull and fold it down.  From there, the bone of his skull will be removed in a large section and placed on a table where the plastic surgeon with "rebuild a bigger brain box" while the neurosurgeon protects Nathan's exposed brain.  Once the bone grafting has been done to re-shape the skull, they reattach all the parts, take out the ventilator and then we get to hold him again.  So yea, this feels like a big one.  

  -  Nathan's Age.  Currently, Nathan is living his best life!  He has had a fantastic year in Kindergarten, preceded by a great Pre-K experience at our favorite elementary school down the street where I teach 5th grade and Maddie also attends!  He's had fabulous teachers, assistants, speech and occupational therapists, classroom buddies and just a community of acceptance and support that we could never have dreamed for him!  He's made MAJOR strides physically in the last year and some of our beloved Ohioans would not believe that the baby they prayed for and provided for can swim, ride a bike without training wheels, read and tell you random NFL stats...  Last time he had this surgery he was blind for about 10 days due to swelling...  hard to imagine him slowing down that hard.  

- Covid Restrictions.  Obviously, we are thankful since there is pressure around his brain that this is deemed a "necessary surgery" and that he is able to get the medical attention he so desperately needs.  However, as it currently stands, only one parent is allowed to be with Nathan.  For the first time in 6.5 years of 7 children's hospitals, all the surgeries, NICU and ICU weeks/months, ER visits, etc. Jonny and are not allowed to be together as our son's body (and therefore our hearts) is in a vulnerable place.  We are still in discussions about who will be with him and finding out if we will at least being allowed to tag-team days so that our son knows that we are BOTH there for him.  I am SO thankful to be married to the man I am married to.  We are really in prayer and trying to defer to the other - I don't want to just play the "mom trump card" and he doesn't want to take that from me.  Neither of us can imagine not being there.  Jonny despises the culturally accepted mantra that Dad's are passive and wants his son to KNOW his presence in his neediest hour.  "I want those doctors to look me in the eye before they take him back.  I want him to feel my arms around him when he is scared and in pain and confused and to know that I am with him."  And yet, "I know you want and need to be there.  I don't want to take that from you.  Your ability to comfort him is so evident."  What a difficult and painful tension we are experiencing.  It's not a tug-of-war over right but it is a tension of realizing we both bring something and we both lack many somethings :)  As in many areas of life, there is not an actual right or wrong so our prayer is for unity that comes from love and humble deference to one another.  (Jonny did warn me that he might get arrested for breaking and entering a hospital so... ;) )

- Insurance.  As always, this is such a tricky piece.  It's been a push and a whirlwind and while all is not totally buttoned up and tidy YET, at the end of the day, this is the Dr. we feel is is best possible scenario for our son and his 1/160,000-200,000 syndrome.  Y'all, Jonny has an electrical engineering degree and a master's of Theology (meaning years of Greek and Hebrew) and we've had multiple types of private and government insurance in two states. Understanding the numbers or language or processes of insurance is not the problem - we just need the right people to sign the right papers.  Would you join with is in prayers for the financial provision through the insurance systems?

THE FOUNDATION:
I won't lie to you.  There have been some BIG feelings these past few weeks as we've postponed and worked towards a surgery that we both wish didn't have to happen and wish we could have had yesterday.  I've been in a hard, raw place with the Lord.  This is the hard thing my family is walking through right now but there are SO MANY who I LOVE who are walking through dark, hard, places.  I'll end with a song I had on repeat yesterday and a text I sent trying to articulate how I'm reckoning my feelings about friends and church members I love and my own family and soul.  JESUS IS SUPREME.  May my heart rehearse and stand on this foundational truth in the very depths.  May His Spirit protect and direct our thoughts to dwell on ultimate truth. 

"I keep listening to this over and over- EVERY. SINGLE. WORD.  I have liked it a lot but it was in the forefront of my playlist and mind the last week or two...  even the bridge “ I can’t stop thinking about your goodness.”  These words are more prescriptive for my heart than descriptive.  It’s not like I’m deeply or even freely feeling His goodness.  BUT- I do know, that I know, that I know it is true.  He IS good.  God is not my enemy - My enemy is His Enemy.  Today, to ground my thoughts, I’ve been reading in Hebrews, remembering and reciting to myself all the ways I have experienced his faithfulness and training my mind to think on his goodness and truth.  In every possible worst-case-scenario, God is still HIMSELF.  That is my foundation and ultimate rest.  I am ANGRY.  I am angry at brokenness, I am angry that I have limits, I am angry that my son suffers.   But God's goodness and presence are limitless.  I am really asking his Spirit to tether my mind and eventually my heart to the truth and reality of who He is.  I know it can and will comfort me.  He may very well move insurance or he may not- either way the FINAL say and victory is HIS and I’m praying to experience his paid-for-on-the-cross victory in my own heart today- regardless of and before the circumstances are revealed!  May HE receive glory for a victory in my own, rebellious heart."

**I'll update my FB and the blog on Wed the 20th.  In the meantime, ALL the prayers, and scriptures and encouragement you can send our way our loved and appreciated deeply.**