Results…

Sometimes results are not always what you want to hear, sometimes you expect them, sometimes you are surprised by your reaction upon hearing what they are, sometimes you wish you never heard them, sometimes your glad you did, sometimes…

On Friday evening we met with Dr. B, Lucy’s GI motility specialist, to go over the results of her antroduodenal manometry study.  I won’t drag this post out, I’ll cut right to the chase, the results are not good.  They confirmed what Drew and I and her current team of docs already suspected, Lucy’s stomach and small bowel have little to no motility.   The study determined that Lucy has intestinal neuropathy,  the nerves in her small intestine do not function correctly thus causing her small bowel to have little to no function.  Lucy’s stomach and small bowel are unable to function in any way where she would be able to take in and digest nutrients.  Even the small amount of feeds (trophic feeds) that we try to feed Lucy so that her bowel wall is very minimally coated with food to keep the bad bacteria from taking over is going to be a struggle.  Her results confirmed that she also suffers with reverse peristalsis, or backwards motility. We were not at all surprised by this finding, her body has so clearly demonstrated this by the sheer number of gj-tubes placed in the last few months.  The medications that we trialed did nothing to help improve Lucy’s motility, in fact they caused adverse reactions, retching and nausea.  The only real stomach contractions that were detected by the study occurred when Lucy was vomiting/retching, there were only a few very weak uncoordinated contractions of her small intestine noted.  These findings confirmed Lucy’s diagnosis of chronic intestinal pseudo obstruction (CIPO), although Dr. B did say that she does not present like a classic case of CIPO because her findings are so severe. 

Drew and I sat quietly and listened to Dr. B describe what all of the lines and squiggles on the report represented as Lucy snuggled in on my lap complaining of belly pain from sitting in her wheel chair too long.  After all of the researching, discussing, praying, and concern given to this study we surprisingly had very little to say after hearing the results.  Dr. B was knowledgeable and professional, but really couldn’t recommend anything in his opinion that would improve Lucy’s motility.  He told us that based on these study results TPN is our only option.  Due to her dependence on TPN and her failing bowels, life threating infections and liver damage are what accompany this option.   All of our surgery options are even more questionable as they will not help her motility, but may help to improve her “quality of life”, if the risks don’t outweigh the benefits.  He did say that before we consider removing any portion of her intestines, that we should consider colonic manometry testing, this way we may know if it is just part or all of the intestinal system that does not function. Sadly, we feel strongly that we already know the answer to that without subjecting her to further testing.  We all agreed that we need to discuss these findings with Lucy’s current team, and define what “quality of life” means for Lucy.