June 08th, 2017

Jo has banked a few solid days in a row, sorry for not posting yesterday but it was a busy day for mom and dad and there were no real changes to his status.  He has smiled a couple more times and seeing part of his right eye open has become the new norm when he's awake.  It is so exciting to see Jo's progress these past few days, and with that progress comes the absence of a need for PICU.  While the care in PICU could never be matched  anywhere else, our experience on the recovery side of the floor was equally exceptional and we cautiously look forward to the day Jo comes home with us.  Being re-located to the recovery rooms, and receiving more "hands on" training and support brings us one step closer to returning to our new "normal."

A few  medical notes on Jo's status:

• Jo will have his first trach change this afternoon performed by the surgeon who performed the procedure.  This is standard to ensure healing is adequate.  Subsequent care will fall to the respiratory nurses and subsequently to mom and dad.  We will spend the next 7-10 days learning how to care for the trach, culminating in doing the change under nurses supervision prior to discharge.
• Jo still has a CT scan and skull replacement surgery ahead.  It seems crazy to say that the procedure is "minor" but apparently it is routine.  After all goes well he will not need to return to critical care, only to be reviewed regularly for any irregularities.  The replacement amazes both of us, the piece missing is at least 4 inches!   

Following the skull replacement surgery only the time needed to learn trach care and waiting for delivery of our home care supplies will keep us at the hospital.  Looking at a calendar mom and dad realized we lost the entire month of May.  We don't where it went, it is gone, and every day during it is just a hazy memory enveloped in pain and uncertainty.  We have never cried so much, felt more hopeless, or slept less peacefully than May of 2017.  The last 2 weeks in April are a literal blur of events, I hope to never re-visit, just horrible.  If Jo is discharged by the 25th of June it will be 60 days here, and 2 days prior to what was to be his last day of 7th grade.

Looking back I don't know how we survived until I read the 1000's of texts, messages, cards, gifts, donations, and well wishes we have received.  It carried us many days, the Lord carried us others.  All along, whenever we felt weakness or pain, we just looked at Jo fighting and knew we had to be there for him.  His siblings have been amazing and have witnessed so much while also staying strong.  The full impact of what has happened has yet to fully sink in with them, in this way they are just like their parents.  It still doesn't seem real at times.

We are determined to remain positive and put our hope in God.  He knows the plan, he is with Jo, and he will bring him back when the time is right.  We struggle immensely with clinical diagnosis of anything regarding Jo.  We view Jo's health as a spiritual one, not a medical opinion.  All docs agree on one fact, there is no person here or anywhere on this earth that can tell us exactly what to expect.  That answer lies in the heavens, and we must have faith and patience to let him do his work.
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Jojobinks, we love you and miss you so much.   We love watching you rest and heal peacefully.  Please be patient with mom and dad while we learn how to help you.  We are scared but your strength gives us strength to carry on.  Rest with God, we know you will be back when the time is right.  We love you to the moon and back sweet angel, you've got this.