A teachable moment

Recovery this time was not going to be easy.  Basically things were a mess.  Christopher was tired and uncomfortable.  The open incision limited his movement, and made it difficult for me to hold him.  The antibiotics continued to drip in through his IV, but the infection still had a hold on him.  He still wasn't able to urinate on his own, so the catheter remained in place. The TPN feedings did seem to be helping with calories and nutrition, but there was constant fear of possible complications. If all that wasn't bad enough, his nose was still clogged with NG tubes to relieve the backup in his stomach.  It seemed like there wasn't any part of him that didn't have a tube, IV, or monitor connected to it.  It definitely wasn't the idyllic picture of a mother with her newborn child. 

Because of the severe threat posed by the infection, an infectious disease specialist was added to Christopher's already extensive group of doctors.  He was in charge of identifying the infectious agent, treating it with the appropriate antibiotics, and monitoring Christopher's progress. 

Each morning the doctors would make their rounds, and each morning it seemed like the crowd of doctors grew larger.  Christopher's case had become the subject of much debate, rumor, and interest at the hospital.  There were all kinds of doctors who just wanted to get a look at him and find out more about his case.  The fact that his diagnosis was so rare coupled with the fact that he had survived the "unsurvivable" caused quite a stir amongst hospital staff and students alike.  Everybody wanted the chance to examine him and ask questions.  His case was an opportunity to further medical understanding of rare disorders, and everyone wanted to be a part of it.

I was actually asked if I would be willing to do an informal presentation, as well as, facilitate a question and answer discussion for students who were studying to become nurses/doctors.  Since I didn't have much of anything else going on, I agreed to do it a couple of times.  It was just supposed to be a learning opportunity for the students, but as it turned out it was also an opportunity for me to share/vent with a captive audience all of the trials and tribulations of Christopher's experience.  It was very therapeutic because I felt like I was doing something constructive towards the advancement of medical science.  It was a way to have something good come out of a very tragic situation.  Maybe I had found some small "silver lining" to this terrible black cloud that seemed to be hanging over Christopher's head.

Presentations weren't the only thing they were interested in.  One day when Christopher went for an ultrasound of his abdomen we were accompanied by a large audience of observers.  It was a chance for them to see the rare and unusual, and so it was "standing room only" in the examine room.  Because there were so many people, they had to have me stand on a stool behind the ultrasound machine, so that I could still see Christopher.  It was kind of surreal.

Things got better!

I was happy that we could do our part to advance science, but sometimes it was overwhelming.  There were so many people with so many questions.  I often felt like a "broken record" because I was constantly repeating the same thing over and over again.  There were days that I wished my baby wasn't "the one with the very rare disorder."  I longed for normal.  Rare might be desirable in diamonds, but it certainly wasn't with digestive disorders.  Why couldn't he just have your average colic or something?  Why couldn't he have something ordinary and easy to fix?  Nothing about this was easy.  It was beginning to feel like things would never get better.

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

More tomorrow...