6 Minutes Wrestling with Life

One Step Forward, 2 Steps Back

Sometimes the questions are complicated
And the answers are simple.

Dr. Seuss

It is amazing. Everyday at 6:00 a.m. some very smart people gives Jess a neurological exam and conclude that she is nonresponsive.

The correct conclusion is that she is non-responsive at 6:00 a.m.

The fact is that if they gave Jess this same exam at 6:00 a.m. when she was healthy, they would have come up with the same conclusion – non-responsive.

It is amazing how smart people keep the variables of the experiment the same everyday, and think they are seeing the full picture.

If BettyJane and I weren't here with Jess 24/7 and we had to rely on their "updates", I would almost believe that Jess was not moving and is non-responsive.

They could be so convincing.

I keep telling the neurologists that if they want to see Jess move, they need to come to her room between 6:00 and 9:00 p.m. I don't know why, but Jess moves a great deal during those hours.

Doctor after doctor gave me the same response, "Your daughter is not my only patient. My rounds will not allow me to come to her room during those hours."

And my response to them is always the same, "Jess is my only patient and your services are no longer needed."

Dr. Leon listened and visited Jess today around 7:00 p.m.

He witnessed Jess moving, just as we have been saying all along.

He also said Jessie's CT Scans are better and better; it is not like anything he has ever seen. He now believes that Jess does not have a full brain injury, that every brain injury is different and he believes that Jess is improving each day.

He said BettyJane and I did the right thing; we never stopped believing.

He said he has never seen a case like this before. He added that most patients, who lose oxygen to their brain for the time Jess lost it to hers, never really move or improve at all.

Dr. Leon's body language is very positive.

I am very encouraged by his visit. I am glad to have him on our team.

That is the good news.

The bad news is that right after Dr. Leon left the room another doctor entered and said that after fourteen days it is routine for a patient on a breathing tube to get a tracheostomy. He explained a tracheostomy is a surgical procedure that will create an opening in Jess's neck where a tube will be inserted into her windpipe. This will provide an airway for her to breath and will allow us to remove secretions from her lungs with a drawing tube.

Jess is scheduled for the procedure immediately.

She also needs a procedure to move her feeding tube from her mouth to her stomach.

Jess is back from the procedures.

I don't know if I would rather have all the tubes away from her face or not.

Without them, there is the stark reality that this really is Jess lying here and it is much harder to look at her.

Jess's eyes are black and blue and swollen shut.

How did we get here? This can't really be happening.

I notice a piece of Jess's tongue is missing. I am told Jess bit down and would not unclench her grip for over twenty minutes and unfortunately bit off a part of her tongue.

I am hit with a wave of emotion as I think back to Percy from "The World According to Garp". I recall that your tongue is needed to speak, and if a piece of your tongue is bitten off, it does not grow back.

I hope Jess still has enough of her tongue left to speak.

I cry.

I know the answer to improving Jess's condition doesn't lay with tears.

The answer lays in sweat.

I need to acquire the knowledge to beat each one of Jess's disabilities.

I need to learn how the brain works so I can send commands to her body parts and teach her how to swallow again, how to think again, how to communicate again and how to love again.

That is the big one – to love again.

Without love, there is no life.

As long as Jess will be able to love again, I will fight forever.

The journey to find and learn all of the specializations needed to get Jess to her maximum capability started the second her two big toes touched.

My plan is to take each disability and attack it like a Rick Pitino full court press.

To create small achievable goals, and when accumulated, will add up to the ultimate goal.

I believe everything I have experienced in my life was to prepare me to SAVE my daughter's life.

I look into Jess's eyes. Something does not seem right. Her eyes are slightly bloodshot and she seems to be distant.

My hope is that the slight, easily overlooked and dismissed signs of slight blood shot eyes, extended sleep patterns, a very slight fever and throbbing in her left temple are not all connected. All of these would never be picked up by anyone who did not spend most of the day with Jess. By themselves they are nothing, hopefully they are not all related.

I prepare myself for the worst.