Our Journey of Ethan’s Head Surgery… Craniosynostosis: Friday & Forever Grateful

Craniosynostis -- Part 8: Friday and Forever Grateful;  msalishacarlson.com/

Friday morning, we were discharged!  A bittersweet moment!  We were very thankful to be able to bring our baby boy home again.  But now, it was just up to us to take care of him.  After hearing the beeping of monitors all week, having doctors on hand all hours of the night, having Ethan be on strong pain meds… it was a little intimidating to be the only ones there for him.  But we were all ready!

Ethan's Head Surgery -- We're going home!;  msalishacarlson.com/

Upon arriving home, we were happily greeted by Connor and Dylan, who were so anxious to see their baby brother.  They immediately rushed to his car seat to welcome him home.  Their reactions were so precious as they loved on him and checked out his new head “zipper”.

Ethan at home after head surgery with brothers & grandma;  msalishacarlson.com/

Unfortunately, our joyous return home early Friday afternoon quickly slipped back to “real life.”  Our middle child became sick on Saturday and while he feverishly cried during the night, Ethan was simultaneously waking up crying out in pain.  He started suffering what our neurosurgeon’s nurse called “night terrors” where he would just cry, fearfully remembering the trauma he had just been through.  That next week and a half at home was rough. Our nights consisted of about 4 hours of interrupted sleep for both Brad and I.  Plus, Ethan’s naps were thrown off as well.  So our already crazy days of 3 boys now had two energetic boys and a tired & cranky baby.  There were a couple days we didn’t even get out of our pjs if that tells you how “great” the day went.

Still, nothing thrilled me more than seeing Ethan’s smiles and baby coos return.  He was healthy and that’s all that mattered.

I am thankful for all the meals provided to us, and all the support and continued prayers for us by friends and family.

 

 

As much as it hurt my heart seeing him go through this, as rough as our sleepless weeks were, as many tears as I shed… they were tears of concern for Ethan, heartache for his condition, but also from joy of a successful surgery and thankfulness that we only had a couple rough weeks unlike families who have terminally ill children.  As we sat in the pre-op waiting room, a little girl came in who, no matter what amount of surgery she has, will always struggle with her disability.  And then there were the fully decorated doors to the room in PICU of the child who has obviously been here a long while.  Or the room across from the bathroom that had large pictures of friends & family placed around the room which made me wonder if that child would ever leave the PICU.  They just all brought perspective and gratefulness to the small amount of suffering Ethan had.

 

There are so many things we have to be grateful throughout our whole journey of Ethan’s head surgery…

  • Insurance!!!  Looking at our insurance bill, the fact that we could afford to have the surgery was such a blessing.  The surgery itself was over $100,000 which we could have never afforded without insurance. It breaks my heart to think that for some families, this surgery may not be option, especially in any non-first world countries.
  • Technology!  I am thankful that this surgery can be done.  Can you even imagine being the first doctor to perform such a surgery… or the families who took the risk on their child before such cutting-edge technology?
  • Family!  Brad’s mom and my parents came and stayed with Connor and Dylan the week of Ethan’s surgery so that Brad and I could both be at the hospital.  It meant alot to me to have Brad at the hospital all week.  Not only was nice having the company, but having him there to keep me calm when it was hard to see little man in this condition was such a blessing!
  • Ethan’s health!  E-baby came out just as happy (or happier) than before!  Being such a big, strong, healthy baby helped him with a quick recovery.

 

Exactly one year and two weeks after the surgery, I am thankful for the doctor’s one-year post-op report…

“Ethan’s CT scan and everything looks fine and in order.  He has good space/volume for the brain and few bony gaps at this time.”

We will have to go back for at least one more checkup, however, I can be nothing but thankful for my healthy little Ethan!

 

James 1: 2-4  Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.

Alisha

Alisha

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