The waiting game

We'd come a long way.  We had a diagnosis, sort of, and we had a plan, sort of.  At least it was better than where we started.  The biggest thing we had now was hope.  Hope is what keeps you going.  Hope is what settles your soul.  It is God's grace over tragedy.

I was really "hoping" this tube feeding plan was going to work.  The nurses came to get Christopher and took him to the treatment room to put the NG tube down his nose.  Then they brought him back, hooked him up to the tube feeding machine, and started the formula dripping.  It dripped in super slow, and the waiting began.  It seemed like time dripped by super slow too.

You might be wondering what tube feeding looks like.  Picture an IV.  Most people have had one or have at least seen one.  The IV fluid is in a bag that goes through a piece of tubing into the patient's vein.  The flow rate is controlled by a special machine.  Tube feeding works much the same way.  With tube feeding, also called enteral nutrition, the bag is filled with formula.  The formula moves through the same type of tubing, but instead of going into the patients vein it goes into the patient's stomach.  The flow rate is controlled by the same type of machine.  The formula bag can hang from an IV pole like you usually see in a hospital, or it can be put into a special type of backpack that the patient can wear around.  This allows for greater mobility during feedings.  Some of the pictures I have included in past blogs show Christopher with his feeding tube backpack on.  He also had an IV pole in his room for overnight feedings.  Here are some pictures of Christopher with his feeding backpack on.  You can see the piece of tubing coming out of it and going underneath his t-shirt where it connects for feeding.

After only a few hours of tube feeding, the crying began.  He wasn't tolerating the feeds.  The doctor was called, and she ordered that the rate be reduced, but this didn't work either.  It wasn't long before the feeding specialist came back.  He examined the situation, and decided that we should drain Christopher's stomach and start over.  He put in another NG tube down Christopher's other nostril and drained out all the painful formula.  Christopher felt better almost instantly.  Then the feeding specialist started the feed up again, but he reduced the rate even further.  At this point, the rate was so slow that I couldn't imagine he could ever get enough for it to make a difference.  Despite my verbal doubts, the feeding specialist pushed the button.  The feeding tube machine started making its now familiar whooshing sounds, and we continued the waiting game to see what would happen.

All I could think to do at this point was to hold onto hope.  Hope that this would work.  Hope that Christopher would live, and hope that we could go home soon.  I longed to see my husband, my kids, my own bed.  We might have to go home with Christopher on a feeding tube, but at least we would be home, back to normal, or at least some kind of new normal.


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

More tomorrow...