The Diving Bell and the Butterfly by Jean-Dominique Bauby

2008 Olympics Sendoff Party

Sue, Devan (Vicky's son) and I spent most of the day helping Dad stay comfortable. He is still in a lot of pain from the Trach and feeding tube. His nurses have finally started letting us use the swab to wet his tongue and suck the water back out. He is so thirsty and there is no other way to quench his thirst. Although he doesn't have a fever today he is still hot. I finally convinced the nurses to let me plug in a small fan to help him stay cool.

He didn't have a lot to say today other than he was thirsty or wanted to be adjusted. For the first time in several days he let me read the newspaper to him. He also wanted me to read him the blog. The Pulminary specialist did not feel a breathing trial was necessary today. He is just not strong enough. We hope the surgeries are the reason for his lungs being weaker. It may take a couple days for him to get his strength back.

Feel free to send an encouraging note in the comment section here on the blog and I will read it to him.

LOCKED-IN SYNDROME

The Neurologist who declared Dad's stroke to be a brain stem stroke called Dad's condition the "locked-in syndrome". He said there was a man named Jean-Dominique Bauby who wrote a book about it after his brain stem stroke. If you can imagine he wrote this book one letter at a time. He recommended we read it.

I wanted to pass on the information about the book so you could check it out. Here's what I found: This Parisian journalist Jean-Dominique Bauby suffered a stroke in December 1995, and when he awoke 20 days later he found that his body was almost completely paralyzed: he could control only his left eyelid. By blinking this eye, he slowly dictated one alphabet character at a time and, in so doing, was able over a great deal of time to write his memoir The Diving Bell and the Butterfly. A few days after it was published in March 1997, Bauby died of pneumonia.[13] The 2007 film The Diving Bell and the Butterfly is a screen adaptation of Bauby's memoir.

For those of you who don't know what locked-in syndrome is I copied this off wikpedia:

Locked-in syndrome is a condition in which a patient is aware and awake, but cannot move or communicate due to complete paralysis of nearly all voluntary muscles in the body except for the eyes. The condition has been described as "the closest thing to being buried alive".

Locked-in syndrome usually results in quadriplegia and the inability to speak in otherwise cognitively intact individuals. Those with locked-in syndrome may be able to communicate with others by coding messages by blinking or moving their eyes, which are often not affected by the paralysis. Patients who have locked-in syndrome are conscious and aware with no loss of cognitive function. They can sometimes retain proprioception and sensation throughout their body. Some patients may have the ability to move certain facial muscles, most often some or all of the extra ocular eye muscles. Individuals with locked-in syndrome lack coordination between breathing and voice. This restricts them from producing voluntary sounds, even though the vocal cords themselves are not paralyzed.