What is it like to have a complex medical situation.
It is frustrating, it is stressful, it is mind boggling, how it is all just a shot in the dark. It’s throwing darts at a dart board. It’s throwing something and seeing what sticks. And then having what stuck unstick after a few uses. Then you start all over again. It’s constant trial and error and change in protocols.
It’s to use dulcolax, don’t use dulcolax, Use glycerin, no wait use golytly. No don’t do that. Use periactin, but know that it causes Neurological side effects, no whatever you do don’t use periactin. It’s being a parent and having no idea which doctor to listen to. It’s having a care team of doctors who don’t even know if they are on board with the other 1/2 of the care team. It’s wishing there was a great Team who 100% knew what protocols worked for these kids. It’s the constant struggle of do we need this x-ray or this the x-ray that puts us in the Too much radiation category. It’s always a guessing game. As a parent I wish we were not guessing with my child. I wish we were not guessing on our friends kids: Connor, Sofia, Ryan, etc. I wish all of these kids and others had treatment protocols that were established, showed progress, and were helping their quality of life. Today is just one of those days were being up a lot throughout the night with Addyson while her stomach was distended and hard has gotten to me. It makes me WANT a fix, even when we KNOW there isn’t one. This is not going away. This is a lifelong issue that keeps showing its face and reminding us that it’s still here. 😦