Questions

Friday was an incredibly important day for Owen.  He was scheduled to undergo a lot of testing which would hopefully shed more light on what is troubling him. The cynical side of me was confident we would leave the hospital knowing no more about Owen and his diagnosis than when we entered.  I was partially correct, but we did learn a few things.

The first thing I learned happened when we stepped off the elevator on the 6th floor of Children's Floating Hospital at 7:30am.  Contrary to what I thought, PICU is not a type of sedation. In my mind, PICU fell into the sedation list below general and above local anesthesia.   I could not have been more wrong.  What it actually stands for is Pediatric Intensive Care Unit.  My mind never connected what PICU actually stood for until I saw it printed out on the wall in front of me.  It must be one of the saddest places on Earth.

I also learned that men who pass out or get dizzy (PETE!) during epidurals are quite possibly weenies.  I watched my son have a lumbar puncture and it was fascinating.  The neurologist who was doing the procedure assured me it is almost exactly the same as an epidural.  They took vial after vial of Owen's spinal fluid and it reminded me of a tree being tapped for syrup.  Owen never felt a thing.

The third thing I learned is that Owen does not like to part with his blood.  He was stuck in every vein and artery they could find and it took almost an hour to draw his blood.  In fact, they were not able to get all of the blood they needed, but DNA from his skin biopsy can be used to substitute for some of the missing blood.  During all of these procedures, including the multiple needle sticks by 5 different doctors and nurses, Owen slept blissfully on his IV of Propofol.  I watched his respirations and heart rate intently and never once did they fluctuate during a poke.  It was wonderful to be in the room with him and know he was okay.

Owen's MRI shows progression of his disease.  It is now located in the frontal portion of his brain as well as the posterior portion.  His MRI is being shared with other neuro-radiologists at various hospitals in the Boston area because what it shows is very rare and open to interpretation.  A final read has not been done, but that should happen on Monday. We were able to speak with his neurologist about the results and none of it is really new information.  We know that what he has is rare, untreatable, and progressing.

Final results from the MRI and all of the labs will come in the next few weeks.  My anxiety about 'knowing' is gone.  I truly believe we will never know exactly what is wrong with Owen.  Dr F, Owen's palliative care doctor, said to me at the end of the day, "No matter what the results of the MRI or labs show us, the most important thing is to listen to Owen.  He will tell us what he needs."

Owen, I am watching and listening.  I love you.