Another Day in the Life of William...

September 8, 2010
Today was a long appointment day for William.  First on the list was our 8am check-in at the hospital.  It's sad when you feel like you've made friends with the secretaries at Patient Registration, but thankfully our friendly Sandra was working at the main desk, so she gave us our 'easy pass' and we breezed through registration, as she said, "this poor boy just shouldn't have to be here all the time."

Poppie joined us for Part I of the morning, so Daddy could get Nicholas to pre-school. By the time we made it to Diagnostic Radiology, William seemed to sense something was about to happen.  His expression says it all...he is definitely picking up on this whole hospital thing.

8:30am - Upper GI Series

It's hard to even know where to begin when reflecting on the experience of a difficult procedure for your little one.  In March, just after we arrived home from NYC, William had an Upper GI that confirmed the gastric emptying problem/pyloric stenosis.  It was literally one of the worse hours of my life.  At the time, he was eating nothing by mouth...nothing....so they had to put an NG tube up his nose and down into his stomach to then syringe in radioactive barium into his stomach.  William was gagging and fighting terribly.  After every few cc's of fluid he'd do a huge purging of the fluid....sometimes even out his nose.  The whole experience seemed to drag on and on.....pinning him to the table (requiring three people), fluids pumped in, a few pictures, a vomit....oh, now we need more fluid in.....repeat the process because the fluid was not in him long enough to pass out of his stomach (where they were expecting the problem to be at the pylorus area).

I was disgusted in the fact that this test was even necessary to repeat.  The last one was incredibly traumatic for both William and Mommy.  I discussed my concerns about another Upper GI in depth with Dr. Ratner last month.  He completely agreed it was not necessary to put William through that experience again.  Well, apparently either he forgot our long phone conversation one Sunday afternoon or he just didn't have the guts to tell me he was ordering another one.  Trust me, I put up a fight to avoid this....and once again, lost.

This time around, I told the technician I was not going to allow for an N-G tube placement....I would get it in orally.  (Some confidence in me, right?!).  We got all suited up - everyone in the room during the procedure has to wear a leaded gown...just another thing to make you feel like you are in purgatory...they are so heavy and hot!

In the end, this time around was not as bad as the first experience, but still way too traumatic than any 15 month old needs to be put through.  Provided a patient and understanding radiologist, a bottle, a straw, 2 different sized syringes and many hands to restrain William....we some how got in enough contrast and barium to complete the test.  William was COVERED in a sticky mess...in his hair, drenched his onesie and coated in his chin rolls.

Poor baby, he needed plenty of cuddles after it all.

After a debacle with trying to have William's weekly TPN labs and the necessary pre-op labs drawn at HEMOC,we ended up being an hour and a half late getting to our second pre-op appointment with Dr. Ratner.  Seeing William happily climb on and off the step for the exam table, you'd never guess he had been through so much trauma earlier that day.  His resilience is truly unbelievable!

For the first time ever, he got super excited for a Safety Pop treat when leaving the office!

Dr. Ratner drew me a picture explaining his two surgical options.  It appears that he has either put a lot of thought into William's case since our last consultation in August or he's done some research.  The black lines represent the GI tract...the esophagus coming down from the top, leading to the stomach, the narrow pylorus area exiting the stomach and then the small intestine.

Plan A (the Preferred Plan):  Dr. Ratner will re-route William's small intestine (shown in green) by creating a bypass around the pylorus and a new exit point for the stomach to empty into the intestine.  If this is done, a G-tube (shown in yellow) will also be placed to allow for feedings directly into his stomach.  This will help in transitioning him back to orally feeding, since it will enable his stomach to experience the sensations of filling and emptying.

Plan B:  If Dr. Ratner determines there is too much involvement/complications for Plan A (such as due to excessive scar tissue adhesions, inflammation or damage from the resection surgery), he will merely place a J-tube (shown in Red) further along into the small intestine. 

Fingers crossed for Plan A!