J is J....

We all know that you can't go to a medical book and find a chapter titled, "Jeremy" or "Jeremy Ray" or "J".  You can read about hydrocephalus, A-corpus callosum, J's heart defect, FG syndrome.  One reason I keep his blog is to hopefully provide some hope for other families who have children with special needs, that like J write their own  book and provide some positive hope.  Though there are "up" days, there are also "down, frustrating" days and life offers us no guarantees for any of us.  It all works to the good of our those who love GOD and GOD who loves us.  My plan is to put these thoughts into a book, that can also provide to professionals what families like J deals with, the day to day of living in Jeremy world.  J is J and he has always not done things as we hoped, wanted or expected but then again he has exceeded many more expectations. 
 
I could almost copy the posting from back on August 6, 2010, for his anterior release with a few minor changes.  One thing I don't have to change is, the day didn't go as I expected, the hopes I had and the disappointments.  Jeremy, was taken back about 8am, they hooked up all the sensor-monitors and IV's.  Jeremy responded to traction well, better than I even imagined he would, like a champion, it never slowed him down and his spine was relaxing and stretching.  Dr. Dan was fairly optimistic that he would get some correction and truly wanted to get enough in the lower extremity to correct J's leg length difference.  I wanted that for J, to gain what height he could, not so J could be viewed by the world as normal because, the GOD who created this complex world, me, you, also created Jeremy.  The bible tells us we were created in his imagine, so by GOD's standards and J's mom standards J is normal.  Jeremy has a sensitive spine, that was determined at the last surgery but since he was tolerating the traction so well I was hopeful.  I could almost tell by the look on Dr. Dan's face and eyes, he was frustrated, things didn't go accordingly and I didn't want to hear what he said.  I wouldn't want to be in his shoes to have to tell a mom for the 2nd time, your child lost motor in his legs.  Dr. Dan actually got started later, he waited 45 minutes to decide if he was going to proceed.  The sensor-monitors started going off immediately, J had trouble with blood pressure, lost a great deal of blood.  They would return J to normal and the monitors would go back to normal.  Dr. Dan did get all the screws in place, he said that is the long part of the surgery and doing the rods takes about 2 hours.  I am in some ways re-living last August nightmare, my worse nightmare, praying over my son's PICU bed, talking to him, telling him mommy is here it will be OK as they work to stabilize him, get his pain meds and blood pressure normal, praying for his legs to get strong and hae emotional outburst and cry.  If he starts to regain good motor function to a standard of Dr. Dan, he will more than likely proceed with placing the rods next week while we are here, but J's spine will be fused the way it is, no correction.  The scoliosis still has to be stopped.  We could also be sent home, back brace, PT and see if and what motor function Jeremy returns and do rods later.  We will just have to wait and see, if we go home and come back then that is God's will and we will do what needs to be done for Jeremy.       

I'm not a parent in denial, I have been researching scoliosis when Jeremy was diagnosed at 3 years old.  I know the spine is a risky thing there are no guarantees but not doing anything is risky for J.  I think deep down I had hoped the chapter of "scoliosis" was going to be closed in our lives.  I don't know why it happened, nor am I understanding God's plan or even the reason, and that tonight I struggle with the whole day of events.  I am exhausted from spending 16 days in the hospital, Jeremy not sleeping, walking the floor for endless hours so J could walk around and play ball.  I am grateful that Jeremy survived the surgery.  I am grateful for our Super-hero, Dr. Dan, a doctor who truly has J's best interest in his mind and heart, a day that didn't go as he would have liked to see or expected but to be doctor enough to say, we aren't proceeding and stepped back, instead of having a "GOD" complex, and proceed just to get this done and over with. 

When we got to PICU, the hospital social worker showed up, child life specialist showed up when they had heard things hadn't went like we had hoped and sit with me until they brought Jeremy and got him set up.  The PICU nurses were walking by and saying, "I remember you and I took care of him the last time".  I remember most of them, they were all so awesome, nice.  It's funny several RT, transporter say, is this the master of disaster on floor 5 who I played ball with, apparently J played ball with more people than I know.  I am grateful for the ones who took the time to play with J.  I love Dr. Burney one of the PICU physician, he is awesome.  I gotta admit I could take a little less of some residents, when the one tonight came in and asked about Jeremy's history, does he have a syndrome?.  I said, "it's all in his paperwork in his file from August 6, 2010".  He admits he just hasn't taken the time to read it, and sometimes mom can add so much more to it.  Well this mom is tired of explaining and reinventing the life of J, and if you are wanting a drama production titled the life of J, I'm emotionally, physically drained and it's  not going to happen.  Dr. Edwards, the Pediatric Anesthesiologist, this was the first time I met him, had a great sense of humor in a tough situation, but he is good and let me tell you when he asked 5 times where is the morphine and who is getting the morphine, someone better answer I have it.