For almost a year I’ve made over 30 calls and worked with six hospital departments to find a way to better handle my daughter’s g-tube changes. My daughter is petrified of the procedure. Her hips are strapped down but I have to hold her arms while she screams, twists her upper body and turns bright red. The first time it happened I had flashbacks to when I had to restrain her for procedures in the NICU. So I've spent months trying to come up with an alternative. I’ve asked for sedation, but been given conflicting information about whether it's safe. I've asked for a child-life specialist to provide support. I've sat outside the procedure room, listening to my daughter (with my husband) scream inside. I've asked if the ‘comfort kit’ is in the room with them, only to be told it’s sitting behind me in the waiting room. I’ve asked if I can take the kit to the room and been told "No." We’ve left in a g-tube that should be changed every six months for 15 months because we can't find a solution to managing our daughter’s pain and anxiety....I hesitate to ask for help because I’ve become more disillusioned with each failure. Our professionals don't work together to solve problems and give conflicting information. And because actions speak louder than words, increasingly I’m convinced that the bigger problem is that they don't care.
I have heard many stories of care successes and challenges over four years and some of the details are mind-boggling. We can spin off easy suggestions. Shop around for a better, more understanding pediatrician, and get the foundation of care off to a good start. Go to the new coordinated complex care teams designed to help exactly these families. Go to patient reps. Speak to parents who volunteer in the hospital for ideas. We can in theory enlist any number of new supports. I would suspect this family has tried some of these routes as well if they logged 30 contacts with one unit about one proceedure. Yet for many families, care is a minefield, and this seems to particularly occur when the syndrome is not well understood or straddles several disciplines. When a parent feels they are the only true advocate for a child and are scared to bring that complex child into the institution because nothing seems to go right we all need to look long and hard at the miss and then act.