Pseudo reality

Your digestive system "on tubes!"

I sat in the doctor's waiting room with Christopher in his stroller.  I watched the other kids playing with toys as they each waited for their turn to see the doctor.  The nurse called Christopher's name, and we made our way back to the exam room.  I layed him on the white paper of the exam table.  It made crunching noises as he squirmed about.  He looked so tiny, so helpless.  I knew he needed me to speak for him, advocate for what he needed, but I wasn't even sure what that was.

The tube goes down the nose, through the stomach, and into the small intestine.

The GI doctor came in the exam room wearing her customary smile and professional demeanor.  She had such a quiet confidence about her.  We began to discuss the situation.  I expressed my frustration with the current plan, and I asked her how other people live long term with this.  She told me that they don't.  The "tube down the nose" plan is usually more of a short term solution.  If someone needs long term feeding tube care, then they install the feeding tubes directly into the abdomen.  I asked the next obvious question.  Does Christopher need long term feeding tubes or not?  The answer was, she wasn't sure.  She wasn't even sure why his stomach wasn't working.  She didn't want to put him through another big operation if it wasn't necessary.  I certainly could agree with that, but what should we do in the mean time until we could figure this out?  What we were currently doing obviously wasn't practical or safe.

That's when she explained to me what "her gut" was telling her.  She was beginning to suspect that Christopher was suffering from a very rare disease called Chronic Pseudo Obstruction Syndrome.   I was thrilled to have a possible diagnosis.  My next question was... what is that, and what do you do about it?  She told me that it was a chronic condition where the GI tract isn't able to move food through the system.  It can occur in any part of the GI tract and in any combination.  It is unclear if it is due to problems with the muscles or nerves of the GI tract.  There is NO cure.  The treatment is to find a way to make him grow and live.  She told me about a doctor in SanFrancisco who had the equipment and expertise to diagnose it.

It is amazing how God made the human body!

We made arrangements to fly to SanFrancisco to have the tests done on Christopher.  Until her suspicions were confirmed, we would continue feeding him with the tube down his nose.  It was the best we could do for now. 

I tried to tell myself that this was good news.  Maybe we were about to solve the mystery, but Chronic Pseudo Obstruction Syndrome didn't sound like a very fun diagnosis.  Didn't she say there was no cure?  I wondered what life would be like for him if that reallly was what was causing his tummy trouble.  Did our child really have this rare disorder?  Rare was probably not good in this case.  I knew we were entering unchartered territory.

 If you have never accepted Jesus Christ as your Lord and Savior, you can pray like this:

More tomorrow...