Turning point

With his new feeding tubes life became much easier.  Christopher has been able to do a lot of LIVING!  Snowboarding is his passion, and he goes as often as he can. 

We had reached a turning point.  God had done His handiwork through the steady and skillful hands of our surgeon.  Christopher's internal architecture had been redesigned along with his future.  Now he had a chance at life, albeit a life with feeding tubes.  There was no cure for his digestive disorder, but God had provided a way for Christopher to live.  The fact that he was still alive and breathing after all he had been through was a miracle in itself. God's fingerprints were all over Christopher's life, and it was clear that He had big plans for him.

LIFE is good...basketball with brother, Michael.

It would take weeks for Christopher to fully heal from the surgery.  Much of that time was spent in the hospital.  It was the same old routine.  His body had to wake up from the effects of the anesthesia and heal from the incisions and manipulations of his internal organs.  Then the slow progression of starting up the tube feedings began. 

This time things felt different though.  They felt hopeful because we finally had found a more practical and permanent solution.  I was actually excited to get to the point in the healing process where we could start using his new J-tube.  I wanted to see it in action.  I wanted confirmation that this was really going to work, and that we had made the right decision. 

As for the G-tube...it was the greatest thing "since sliced bread!"  I know that sounds kind of silly, but it was such and incredible relief to never have to use one of those awful NG tubes down my son's nose ever again.  The ability to be able to just hook a tube up to it and drain it out in a bag was the best gift ever.  It allowed him to be much more comfortable.  No more waiting till he cried and then cramming a tube down his nose to relieve him.  It was clean, simple, and practical. 

Aloha, LIFE!

Once we were released from the hospital, our life at home changed dramatically.  We were able to develop a somewhat normal routine, and we were finally able to live as a family under the same roof.  It felt like I could breathe again.  Life had improved, and we all welcomed the change with open arms.

Some things stayed the same though.  There were still lots of doctor appointments that we had to go to, and it would be another 10 years before we would be able to sleep through the night.  Every night the feeding tube would sound its nightly (usually at least 3 to 4 times a night) beeps indicating that something was wrong and needed to be adjusted.  Mike and I continued to take turns getting up until Christopher got old enough and skilled enough to take care of it on his own.  Then, of course, there was infection.  He still got infections, but at least they were fewer and farther between.  They were also less severe, and most of the time they could be treated with antibiotics at home and did not require hospitalization.

Livin' LIFE out loud! Camping in Bend.

A new problem was tube replacement.  Occasionally, the tube would fail or come out and needed to be replaced.  At first this was an emergency situation, and we found ourselves making midnight runs to the emergency room on more than one occasion.  In time, we were both trained to replace the tubes ourselves at home.  It was pretty scary at first.  I was afraid that I would do it wrong or that I would hurt him, but it wasn't long before we both became experts at it.  Eventually, Christopher would learn to replace them too.  In fact, he would learn to completely take care of himself on his own.  He was a pro at trouble shooting the "beeps" of his feeding tube, and he developed all kinds of tricks and shortcuts to make life with feeding tubes easier for himself.

Another new problem was clogged tubes.  Every once in awhile, there would be a buildup of some sort that would block one of the tubes and cause it to malfunction.  The best cure for it was to use a syringe to flush the tubes with...Pepsi or Coke!  Believe it or not, the stuff will eat through just about any clog.  Imagine what it does for your stomach.

At peace with LIFE

Despite a few pitfalls here and there, life went on.  Our house was busy with boys, and feeding tubes were no longer foreign.  They were just a way of life.  We learned to accept them as a blessing, and we all became experts at managing them. 

It felt like God had smiled on us.  He had carried us through some pretty terrible times, and brought us to this turning point.  The book of Christopher's life was not finished yet.  God was still writing it, and He had some pretty awesome plans for the story!!!


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More tomorrow...