Hospitals are no place for a sensory defensive, Part I

I know it has been awhile since I've posted on this blog, even though in many ways it is the most important of my many blogs.

I have wanted to for awhile but struggled with the enormity of feelings and such related to this particular post.

As many of you may know if you read this blog, my 10-year old son had tethered cord surgery in early November. The surgery itself went well. He is apparently getting stronger in his toes and lower limbs every day. He is likely better balanced although right now we are foregoing occupational therapy, due to our family being less than fully employed, so we don't have the regular check-ins on this to guide us.

What didn't go well was pretty much the entire experience once we got down to business to have the surgery. Even though I am an astute mother who knows the many triggers for my sensory-aversive child, I didn't even fathom the depth of experiences involved in this process that would be entirely disturbing for my son.

First he was supposed to take some medicine (which he had done once before for an MRI) to take the edge off and make him not so much care about the procedure. Worked like a charm for the MRI, but this time the taste (which he now had a horrible memory of from before) was so offensive that he ... just... could... not ... take... it. I could see his internal struggle. He is old enough to know it would help but he just couldn't make his body drink the liquid. He cried. He tried. He spit a bunch out. We tried again. Cried more. Finally drank what was in the cup. So at the outset he was already deeply upset.

Only later did our anesthesiologist (who by the way never called us the night before the procedure as he was supposed to do which caused other problems) blithely informed us that since he didn't take the ENTIRE cup of medicine, it really wouldn't be able to help him at all. He remained stressed, nervous, shaky and very aware of his surroundings all the way into the operating room. I can only imagine how upset he was until the anesthesia kicked in.

Why didn't the nurse or anyone else tell us during the entire medicine ordeal the same piece of information. If it was useless unless we had a full dose, why did they not either fill up the cup to ensure it would work or let us know it was  not worth the effort and just move forward?

And that was just the beginning.