Life from a tube?

This is what tube feeding looks like.

Tube feeding???  Where had I heard about that before?  Isn't that some type of end of life care option?   Isn't it used when someone has been in some kind of terrible accident or has some type of fatal disease?  The patient is dying and can't eat.  As an act of compassion they are tube fed until death occurs.

In our particular state, Oregon, this issue has been in the news a lot.  There has been considerable debate and legislation about a person's right to take their own life if they are facing impending death due to accident or illness.  All of the end of life care options have come up for discussion as well.  That's where I had heard about tube feeding.  I had always heard it talked about in those terms, "end of life care."

Does our GI doctor think Christopher is dying?  Is he terminal?  Is there something she is not telling us?  Maybe she is just doing this tube feeding thing until the inevitable happens.  These were horrible and very uncomfortable thoughts that kept swirling about in my mind.

I asked to meet with her again.  I just had to get some of these questions answered.  I couldn't stand not knowing.  I needed to hear the truth.  I needed to be able to prepare myself one way or another.

It was the best thing I ever did.  I asked lots of very frank, pointed questions, and she gave honest answers that helped to settle my mind.  She assured me that she didn't think Christopher was going to die.  She said that there was something wrong with his stomach.  She didn't exactly know why it wasn't working, but she was using the tube feeding as a way to help him live and grow.  It wasn't being used as an end of life care option.  She wanted me to know that she hadn't given up on him.  She was going to keep looking for answers.

I left the meeting feeling totally RELIEVED!  Tube feeding wasn't just a compassionate way to die.  It was a way to LIVE!  Please read that sentence again.  It was a way to LIVE!  (The picture at the right is proof that you can live and grow on tube feeding.  The back pack has his feeding tube inside of it.  He is "hooked up to it" and feeding.)  I often hear people say that they would never want to live if they had to be tube fed.  I'm here to tell you that it is not the worst thing in the world.  In fact, it saved Christopher's life, not ended it.  Without it, he would have definitely died. 

It wasn't what I would have chosen for my child if I had been given a choice, but I was grateful that we had an option.  Unfortunately, tube feeding did turn out to be a bit tricky just as the GI doctor had predicted.  It was a fix, but it wasn't a perfect fix.  It would take some experimentation and imagination to ultimately make it work, but God had given us a great doctor.  She really was an "angel in a white lab coat."

Here are some pictures of Christopher "doing life" because of his feeding tube.  He does it all.  He snowboards, plays basketball, and goes on vacation.  I always say that he lives life out loud.  He doesn't let his feeding tubes hold him back. 

Christopher, Michael, and Ryan "hangin' loose" in Maui.  You can see Christopher has his feeding tube backpack on.  Life is good.  God is great!


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More tomorrow...