Back on Protonix again

Our trial run off Protonix hit a wall and Peter is back on it again.  He did not have typical reflux symptoms while off it, but instead had increasing amounts of stomach air that would make him feel terrible until we were able to vent the air out of his G-tube.  We were venting him multiple times a day, over a period of 14 days.  The doctor is not certain what exactly would cause that type of symptom without further exploration, but suggested that we try Protonix again just to see if that helped Peter to feel better and get rid of the stomach gas.  It worked like magic!  The day before we resumed, I had to vent his stomach eight times in 10 hours, venting up to 250mL of air out of his tummy.  I gave him his IV Protonix at bedtime and the next morning he woke up and said with glad surprise, "Mommy, my tummy doesn't hurt."  Sure enough, we did not need to vent his G-tube at all, and his appetite was huge the entire day.  He has only needed two ventings of air, minor amounts, since we resumed the Protonix four days ago. 

The side effects of Protonix are what led us to want to try to take him off the medication.  Osteopenia from bedrest, TPN, and hospital-life (no sunshine for vitamin D) led to his broken leg back in CHOP a few years ago, and one of the potential side effects of Protonix is osteopenia.  There are other possible side effects as well, but my biggest concern at this point is osteopenia.  Also, Protonix is not well-studied in children.  After seeing the profound improvement that Peter had once going back on the medication, it seems obvious he needs to be on it though.  I am hoping the doctor can weigh in more on the atypical symptoms when we go back up to Boston.

The vascular anomolies team is to review Peter's case tomorrow evening.  We wait with mixed emotions.  Of course, Boston is expecting a major snow storm tomorrow with 15 inches of snow and huge winds, so it may unfortunately be postponed. 

The fistula is now putting out an average of 1300 mL of fluid a day.  It is a challenge to keep the fistula empty enough as to not have the adhesive on the bag wear out too quickly, and to respect Peter's wishes to empty the bag as infrequently as possible.  We empty it 5 to 6 times a day, and even then the wear on the bag has been shortened from 3 to 5 days of wear down to 1 to 3 days of wear.  The doctor and we agree that trying to increase feeds would be imprudent, as that could further provoke the fistula into putting out more.  So once again we are at a standstill in our ability to wean Peter off TPN, even though we had success with getting off 3 nights a week back in 2009.  We remain prayerful and hopeful that the surgeon will figure out how to close off the fistula soon.