Update (late posting)

 I THOUGHT I POSTED THIS WHEN I WROTE IT...So sorry for the long pause on the updates. This month has flown by. I remember decorating Billy’s room early in December thinking  that Christmas was so far away. Here it is, the day after Christmas and I have left you with no updates. So, I’ll pick up after Dr. Lee’s visit to adjust the shunt. The shunt needed to be opened to allow more water to draw away from the brain, ideally removing more pressure from it. If that adjustment was to make any  difference in Billy’s condition we would see more movement in his arms and legs. And I can see small changes, mostly a softening and ease in his hands. They are not clenched as tightly

The news that I have been hiding from you, and the reason that I have not written is because  before Dr. Lee left I asked if Billy was still to be considered to be in a coma. He told me that Billy is considered to be in a vegetative state.

A vegetative state occurs when the cerebrum (the part of the brain that controls thought and behavior) no longer functions, but the hypothalamus and brain stem (the parts of the brain that control vital functions, such as sleep cycles, body temperature, breathing, blood pressure, heart rate, and consciousness) continue to function. Thus, people open their eyes and appear awake but otherwise do not respond to stimulation in any meaningful way.

The vegetative state is rare. It is sometimes called unresponsive wakefulness syndrome.

A vegetative state that lasts for more than 1 month is considered a persistent vegetative state. (However, other durations of time have been used, sometimes depending on the cause of the vegetative state.) Most people with a persistent vegetative state do not recover any mental function or ability to interact with the environment in a meaningful way. However, a few people with a persistent vegetative state improve enough that the diagnosis is changed to minimally conscious state. In people in a minimally conscious state, awareness is severely but not completely impaired.

He is still having trouble clearing his airway on his own,  so he still requires suctioning of mucous from his chest. The good news is that the wound on his sacrum  is healing nicely.

Dave and I have been away from Billy for almost a week now. We drove back to NJ to spend Christmas with our families. We also made time to visit 2 skilled nursing facilities along the way so that we can bring him back to Florida. We are still waiting for phone calls to be returned and for  Florida Medicaid to be approved.  We miss him like crazy!  

And you have all been incredibly supportive, just when we get down, or angry someone sends a note, text, email or phone call to pick us back up again.

Do you believe in miracles? I do.