Keeping hope

Jo has had a very good day with no issues.  He was visited by the surgeon who is planning a CT scan Monday to review the possibility of replacing the piece of his skull.  Short story is he needs to ensure he is not "forcing anything back in place".   Provided he is comfortable with what he sees, the surgery could be next week ( yikes!!).  This would mean two things, first he would be intubated again for the surgery, secondly he would return to PICU and be closely monitored for brain swelling.  What a horrible roller coaster... We would be crushed if progress was lost with Jo's recovery and intubation, extubation, and brain issues are all complications that could occur.  We are terrified but know this is part of the process for getting Jo home, God give us strength.

The last few days seem some of the hardest we have spent here.  Partially because we have blocked out so many of the days leading up to this week.  Fueled by adrenaline and focus on Jo's survival decisions were made quickly and thoughts about complications weren't even factored in to the equation.  Now, idling waiting for Jo to show more improvement leaves us in a state of panic if we see the slightest change in his overall stability.  We have listened to Jo breath for so many consecutive days we know it by heart.  We also know when it doesn't sound right, and at times you trick yourself into thinking you heard something you didn't.  

That breath seemed more labored...he paused too long between breaths...his respiratory rate has declined...his heart rate is too rapid.  Off course none of these things are true, but the devil sneaks into the smallest crack and with him brings doubt.  It is at these moments we bow our heads and pray and feel the strength of each of you praying with us.

We will not accept that we can't have our Jo back.  We refuse to question the plan.  We are up to the challenge no matter how painful or difficult, we are not alone.  The Lord is with us and we can feel it, each of you provide an added strength that cannot be measured.    We will wipe our tears, steady our gaze, and fight by Jo's side.  There is no room for doubt, we will put our hope in God.  One miracle at a time...

Jojobinks, mommy and daddy are here.  Please open you eyes and let the light back in.  Mend our broken hearts and show us the miracle that you are.  We are on this journey with you, we miss you so much.  We will never give up hope, and we know you will never give up the fight.  Take God's hand and come back to us soon.  We love you to the moon and back sweet angel, you've got this!