My Hole

The picture is 3/9/2020

at the gastro-intestinal doctor's office.

My daughter is trying out her 

new camera and filters. 

I have to get my feeding tube changed.
(Update 3/11/2020)

I have a hole in my neck...but I can breathe now so I don't mind. How did I get a hole? I couldn't breathe. I lost consciousness and I guess at some point a hole was cut into my neck to hook me to a machine to breathe, a ventilator.

Breathing has been such a big deal, but it has been treated as secondary. What good is anything (medication, medical procedures, or therapy) if the person being treated doesn't breathe?

I put some pictures together that show it has been a very  long time. Completely breathing on my own has been a long process. That process didn't end with me getting off a ventilator, but many years later. My lungs were finally able to get continuously off a machine. The tube may be left in, and mine was, in case machine hook up is needed. When the lungs are strong enough, the tube is removed.

This is where my hole comes from. Although I was removed from the breathing machine, the ventilator, the tube was left in my neck for years. When the tube finally comes out, the hole left behind will naturally close on its own. Mine didn't. The skin over it had to be surgically closed. I've been left with an indentation that slowly gets smaller over the years. Breathing treatments (I was frequently getting these) soon ended after closing the hole. I used an inhaler (like for asthma). Breathing issues now can just be handled by my regular doctor.

The above was taken at a birthday party. I got out of the hospital for the day. The picture below is just an enlargement of me. After the party I returned to the hospital. I was placed back on the ventilator.  I was  not all the way weaned from it yet. This third picture is the same day and you can see my arms. Besides the IV bruises, I have hospital arm bands on. 

These pictures were 2003. I remember that as soon as I got back to the hospital I was hooked back up to the ventilator. This party was the longest I had been off. The hospital was in the process of weaning me off of the machine.

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This is in 2006 before I got out of the hospital. The hole in my neck was just closed. Prior to that it was open and I could breathe through it. The tube had been out a year, leaving an open hole. I used that open hole for breathing.

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This was my profile pic at WeAreTBI.com. That was 2009. You can see the hole is closed and healed.

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In 2013 you can see the hole has gotten smaller. At this rate, I will have a hole a while. Eventually it will become a scar.

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2/2/2017
Here's 4 years later. Obviously changes are happening.

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2019 Update

15 years after the tube was removed, I still have a hole in my neck from the ventilator. I had this thing for 2 years, which is unusual to breathe on your own again after being on a machine for so long.

I was weaned to room air after the first year. It is all out now. This process is taking years. It's not just being on a machine, but also the many years of damage.

This video was earlier this year (2019). At 55 seconds I start turning my head and you can see the hole. I did a tracheal tube for years. It was removed a few months after the surgery and procedures at Stanford to remove the AVM (blood clot). Then I had an open hole for a year. I had surgery in 2006 to close the hole. (Tracheal tube was removed 2004 and the hole did not close on its own.)   

I've had many pneumonias. These have become less frequent. The last few years it has been bronchitis and other bronchial infections. That's where it ends for now.