Josiah was discharged from the hospital today.  He was frantic and in apparent agony as we raced him to the ER in the wee hours of the morning Friday. Tuesday he began struggling with incontinence (unusual for him), increased thirst, heightened aggression and self injurious behaviors, incessant screaming to the point of making himself hoarse and a bloody left ear from too many punches.

Earlier in the week as things began spiraling downward, I quickly ordered 2 different helmets for him from Amazon.  One is a skaters helmet, heavy and cumbersome, completely padded inside with great ear protection, clearly not meant for the purpose for which I purchased it.

The other, constructed of lightweight ventilated foam with custom cold packs for a cooling element is designed for individuals with disabilities and includes a padded chin strap.  It was also quite a bit more pricey.It saddens me Josiah needs a helmet at all, let alone THREE of them.  The first one he received in September leaves his ears exposed, hence the opportunity to easily injure them. I purchased a lycra body sock to keep his arms tucked safely at his sides, however it hinders most other activities as well and when he really wants to, Josiah has learned how to work his way out of it. The only other solution I could think of was different head gear.

The skater helmet arrived Saturday and was placed on Josiah’s head in the hospital shortly after. So far, it’s been effective.  He hasn’t been pummeling his ears so there’s that.

However, we have no definitive answers.  Why does our boy double over, screaming, punching, scratching himself and us?  Why does he lunge for me to rip out my hair?  Why do his ‘episodes’ (for lack of a better term) come out of no where, last for 10-15 minutes then suddenly stop?  Why have they increased in intensity and frequency last year?

WHY with all the intervention since February, 2017 have things not improved or at least stayed the same? Why has Josiah’s quality of life continued to decline month after month?  What is the purpose of intervening at all if it’s not going to create a positive outcome?

How much more can this boy take?  I don’t know.  As heart breaking as it is, I don’t have the answers.

The doctors and specialists at the hospital didn’t either.  They ran tests.  They did an x-ray, looked closely as his pancreas, gall bladder and liver with an ultrasound in addition to blood work, urine and stool testing.

They listened intently.  They put their heads together to sort out this mystery as best they could.  They were not willing to send us home until they tweaked medications, ordered additional outpatient testing and offered helpful advice.

It was the first time in a long time we were not dismissed and sent home with little hope.

We aren’t out of the woods yet, not even close.  But we are home.  Josiah jumped joyfully on his trampoline as soon as we got in the door and was very happy to be back in his own bed.

Here’s hoping we all get a great night’s sleep tonight. Here’s hoping 2018 is THE year Josiah’s issues resolve and he’s a happy camper ever single stinking month.

And, here’s to the thoughtful, compassionate, kind and helpful staff at Texas Children’s Hospital, main campus.  We are grateful for the wonderful care they took of Josiah this weekend.