all is well, resting and healing

Sorry to have missed a few days with updates, on the  bright side I haven't updated because Jo has been solid with nothing new to report.  He has rebounded well from his skull surgery, and we anticipate staples out within 10-15 days.  Jo is young and strong and healing does occur pretty fast, so it could be sooner.

Jo is not in PICU anymore which is great.  In fact he has gone from a monitor with multiple areas being measured to just oxygen saturation and the periodic blood pressure measurement.  Less  monitoring means less oversight and less concern over stability, we like that.

We are now at the point where discussions about going home occur almost everyday.  I don't want to leave with any sutures in place, so that leaves us anywhere from 10-14 days to discharge.   Discharge is contingent on the following:

• We have his room at home set up with all of his equipment
• We have a means to get Jo around (wheelchair and lift)
• We have been thoroughly trained on trach care and use
• We have been thoroughly trained on G tube care and use
• We are comfortable 

The top issues are related and the hospital has been amazing with setting everything up with our insurance.  Soon we will meet the medical rep to review the exact equipment we will receive at home while in Jo's room.   There are typically differences between hospital and home equipment and this gives us the opportunity to see those differences before we go home.  In short everything about equipment and room setup could be covered and in place in a few business days, certainly not something that will keep us here longer than needed.

The last 3 issue are directly related and  why we need to make the most of the next 2 weeks at the hospital.  We need to act like the nurse aren't here.  We need to act like the Dr isn't just down the hall, because the terrifying reality is, soon enough they wont be.  In fact we are required to spend a full 24 hours conducting all care prior to be "allowed" to discharge.  We will only have help if we call for it, and we will be expected to handle it all.  Handling it for 24 hours without any professional help sounds scary, until you realize that is our new normal.  We anticipate at least 8 hours a day of in home nursing to relieve mom and dad, but anything more than that is unknown and certainly not guaranteed. The journey continues, we know God and our friends and family will continue to see us through.

Please keep our family in your thoughts and prayers.  While we are extremely happy at thought of Jo going home we are also scared.  There is nothing worse than not being able to help your child.  For the past two months virtually all of Jo's care has been out of our control. Since initiating the take over of his everyday care we are both excited and scared, but we are ready for the next challenge.

Jojobinks mommy and daddy are here and we love and miss you so much.  Every time we feel sad or desperate, we look at you and feel renewed.  You have shown amazing strength and courage, the same strength and courage mom and dad will now show you.  We are as ready as we can be to put our home and family back together.  Don't be scared, we asked God for to let you come home thousands of times, he answered our prayers.  He remains with us as we prepare to receive you at home like we did when you were born.   We know there are many more challenges ahead of us, but also many more miracles.  One miracle at a time baby boy.  We love you to the moon and back sweet angel, this time we've got this!