September 13th we took Josiah to the ER.  His self injurious behaviors seemed to be a response to pain and were not improving.  It was heart wrenching to watch him so distraught.  With no real explanation as to the source of his distress, we set out to find some help.  Assuming we were dealing with chronic constipation, the consensus was to insert a tube up Josiah’s nostril and down his throat for a solution called Go Lightly to be pumped through for a bowel clean out.

At 9 pm at night, after a very exhausting evening, it made sense  After listening to him shriek, attack himself and us, it was worth a shot.  Someone was willing to try something to hopefully shed light on the origin of Josiah’s pain and offer relief.  Rick and I were on board.

In hindsight, we should have thought it through a little more carefully.

With nothing to calm Josiah or decrease discomfort, his hands and feet were strapped to the hospital bed while a long tube was inserted up his nose.

I had to leave the room.

It took 7 people over an hour (actually closer to 2) to get the tube properly inserted to begin the procedure.

Rick and I sat alone in the empty hallway, listening to our ‘baby’ in agony just a few feet away.  Periodically my eyes would well up with tears and I had to force myself to think about something else.

“We are trading one form of suffering for another”,  Rick expressed at one point.

Josiah had no idea why we were allowing them to do this to him.  We hadn’t adequately prepared him.  Is there a way to adequately prepare him?

Why didn’t we insist on some type of sedation?  Why didn’t we ask for something to relax him a bit before ever even strapping him down to the bed, let alone shoving a tube down his throat?

All Josiah knew was that he’d have a very rough week of painful episodes that now landed him in this strange place, surrounded by strange people who were inflicting more pain.

My heart was breaking.

When the deed was done and the tube was inserted, fluid flowing freely, Rick and I were allowed in to see Josiah.  Those 7 people, mostly large men, drenched in sweat, exited the room saying, “Your son is very strong!”

We followed the gurney, Josiah still strapped to it, down a long hallway, up a short elevator ride and around a few corners towards the room he would occupy for another couple days.  

Moments after this picture was taken, Houdini managed to rip the tube out of his nose.

We walked into his room, tube completely removed, Josiah still strapped to the bed at 3 am.

The ER doctor rushed in, apologizing for all Josiah had to endure.  He instructed the hospital staff to simply leave us alone because we had been through enough and just needed a break.

The next morning, they suggested we try offering the Go Lightly solution to Josiah as a beverage.  We added some raspberry flavored Crystal Light and he sucked it down.

The goal was to encourage one cupful every hour.  In less then 3 he consumed half the jug.

Though we didn’t ever get him to finish the rest of the liquid, it was sufficient enough for a pretty decent bowel clean out.

Self injurious behaviors continued, though less intense than they had been.  It was decided Josiah’s were not a result of constipation.  Perhaps, he’s simply a teenager with Autism and raging hormones. Maybe this is ‘normal’ and to be expected from someone like him.

The attending physician as kind and thorough as she was, explained there was not much more they could do.  If we wanted to be transferred from the campus we were at to the main campus down town, they would arrange for Josiah to be admitted for psychiatric support.

So there we were, between a rock and a hard place.  Despite our best efforts to seek possible underlying hidden causes for Josiah’s uncharacteristic, unpredictable tearful, painful episodes, we were led to believe Josiah needed medication to control his outbursts.

We left 2 and a half days after arriving, with a padded helmet consolation prize.

Hopefully he will be better now.  Use the helmet if you need it.  See his psychiatrist for new medications.  Good luck.

October 14th we were back in the ER.