The Night Before Shade's Second ERCP (from 10/15/2014)

Hello All!  I am late-night blogging in anticipation of Shade's second ERCP tomorrow.  This is his first one since August of 2012 and while the last one went well, that doesn't mean this one will.  An ERCP is where they put a scope down his throat to get a better look at his pancreas and see if there are any narrow ducts.  They want to compare it to the results from his first one and see if there are any changes that they can sort of fix. One way to do this would be by placing a stent in any narrow ducts to widen them.  I'm on the fence about this because from speaking with other Mom's whose kids have had stents placed, the results can vary.  Some do very well with the stents and have long term relief, some have short term relief, and others end up with the worst pancreatitis attack of their lives with no relief until the stent is removed.  That is my worst fear right now.  To have my baby go in for a procedure that may help and have him come out of it worse for the wear.  Even if there are no stents placed, the procedure itself carries a risk of an attack of pancreatitis.  We will be staying in the hospital overnight for observation even though it is usually done as an outpatient procedure.  We could be home by the weekend or we might have to stay a week or more if he has an attack.  The unpredictability is the hardest.  Not knowing what is going to happen next.  Every time Shade is in the hospital with an attack I wonder if that will be the one that causes him to have pain all of the time and not just during an attack, or if he will be unable to eat without pain and end up with a feeding tube.  Things have been hard on him so far, but they could be so much worse and that possibility is always there.  I've known it in my gut for a long time that the TP-AIT is the answer for him.  I just feel like the odds are stacked in his favor for a very good outcome and it would mean the end of pancreatitis forever!!  Of course, I could be wrong, but the fact that Minnesota (the original experts on TP-AIT) agree that it is the route to go with Shade makes me feel that much more strongly that he really needs this.  I respect the doctors at Cincinnati Children's and I appreciate that they are trying to approach Shade's treatment with caution, but its starting to feel like I'm just having to jump through hoops to get them to give me an answer.  I feel like messing with his already sensitive and irritable pancreas will only cause things to get worse for him, however I am not a doctor and there comes a time when you have to decide to let the doctors do what they have gone to school to do.  Being a Mama is hard.  Being a Mama to a child with Autism is challenging. Being a Mama to a chronically ill child is heartbreaking.