Tuesday, September 23, 2014

I Question the Definition

"In exceptional cases, prolonged support is possible as long as oxygenation, circulation, nutrition, and treatment of multiple medical complications is provided," they write.  http://www.medscape.com/viewarticle/832001

It's going on 12-years that I have had a feeding tube. I was on a ventilator at least 8 months. I breathed through a tube in my neck for 3-years. I spent 1 more year breathing through just a hole in my neck. The neck hole can be viewed at http://thoughtfulveg.blogspot.com/2014/04/my-hole.html

I should be in medical care...but I'm not. Those needs are provided for in other ways.

I was in a deep coma 5 weeks. One friend described that it looked like I was sleeping. My family says they were told I was "brain dead" when I opened my eyes. A bit later I was  PVS, persistent vegetative state. "Persistent" turned into "Permanent."

Permanent stuck. I now talk. I never met any vegetables that talk. I'm now moving my paralyzed arm. The arm I am typing with was once paralyzed.

Brain death didn't fit. "...California's Uniform Determination of Death Act.That Act states that an individual who has sustained either irreversible cessation of circulatory and respiratory functions or irreversible cessation of all functions of the entire brain, including the brain stem, is dead." http://www.medscape.com/viewarticle/832001#2 My heart was still beating at the time that was said. A ventilator did my breathing. I still get nutrition through artificial means, a feeding tube. (I believe the feeding tube still qualifies me for nursing care.) I did not respond to my environment. (I do now, obviously.)

The  word "decerebrate" is used in a report. Was the word interpreted as no cerebral function? The entire term used was "decerebrate/decorticate posturing to pain." This describes motor quality, not brain function. The report is the initial hospital transfer record from Sutter Roseville.

A while ago, I received a letter explaining that what I am experiencing is also called a coma. http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html So I am currently in a coma. I would say I am experiencing recovering paralysis. (In my case only. I cannot comment on something I don't know.) Yes, that would mean what was called PVS was total paralysis. As I recover, I am able to do more and it looks miraculous

Now for PVS... This state wouldn't have meaningful conversation. There definitely isn't any writing in this state. "Moreover, if this person is typing full fledged sentences with complex thoughts they have moved beyond the minimally conscious state and into something akin to "locked-in syndrome" or what might just be called severe paralysis," Gary Williams. Locked-In Syndrome is what my family thought I had when I didn't talk. Others have said it, too, but I never got a formal diagnosis.

PVS may have fit at the beginning, but not now. I question the word "permanent." A rare disorder has been forgotten. If it is applied in this situation, questions can be answered. Certain words/terms can't be used.

I make this journey, not you. Ask me if you have questions.

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