Home again home again Jiggity Jog

Sissy was discharged Friday morning in time for the holiday. There was no possibility convincing the staff that the holiday was a trigger and would undo her recovery in a skinny minute. Their response was "v.istaril 3x/day and b.enadryl an hour after dosing that it doesn't work"

pbft

It's not meant to be a maintenance med (neither is b.enadryl), it's intended to be a last ditch choice to dull the rage and psychoses. But 60 hours post-discharge and we've learned she can not function without it. Home environments are just too much for her.

72 hours on the floor Sissy went from all-out crazy-messed-up with self-mutilating behaviors and a head-banging rage that may or may not have resulted in a minor concussion to being bright-eyed, smiley, cheerful, well-groomed, cognitively alert and regulated, even seeking appropriate affection. Yes, the staff upped some other medications but not enough to make that kind of drastic change in such short time. My conclusion about the radical change overnight? Environment.

The stark white, institutional-like structure, the uniformed staff and the rules of the floor are what she needs. All else makes her mind unravel. And I think Sissy knows it too.

While at the hospital, I redid her room. Best thing about foam walls (which the staff was delighted to hear about - so glad we were able to make that hard choice for her safety)[1] is that they can be written on. I put the 9 gifts of the Spirit [2] on the walls with correlating scriptures for all of them. I put her things in clear, labeled bins to ease clean up. I returned all lovies and blankies. I hung all non-harmful artwork (with the exception of a framed d.isney princess lithograph but I faked a rage and the picture didn't go anywhere so I think it's ok). The room looks pretty. It looks inviting. But after seeing how the stark, white, void nature of the hospital helped her, I am worried that my good-will may backfire.

There was only one other patient on the ward so with a quiet floor and not much to do, the staff devoted an extensive amount of time observing and deliberating over Sissy. At discharge the doctor overseeing her case greeted me and said with a sigh as she sat, "Well... Sissy is a VERY tough case."

It was oddly vindicating and equally alarming to hear those words. I have been saying for years that Sissy is more than I can manage alone and that she is getting worse, not better despite the hours of weekly therapy and the years of medication juggling. But I did squirm a little knowing that the only safety net I had for such a challenging, difficult child is V.istaril.

Then the doctor said Sissy would probably need a few more stays at the psych floor so they could really nail down her issues. And a few more stays means we up her Cafas score high enough to get a PRTF that proves she needs long term placement. Reading between the lines I can extrapolate the truth that the psych staff do not believe a home environment is the best place for her either but insurance is what insurance is and this is the game we must play.

For now, three things remain:
#1 - as I suspected a month ago (but initial tests disproved) Sissy is suffering from hypothyroid which is probably increasing the intensity, frequency and length of her rages (it also makes me feel better about her weight gain - it's not all her g.eodon! GOOD news)

#2 - We are to add autisic therapies at home - compressions and brushing, weighted vest and blanket, swim (which she was getting but she hated the instruction so I'm going to change it to free swim from the adaptive swim lessons), white noise, warm baths, lots and lots of sensory input that does NOT include much human contact because...

#3 - she's a very severe RAD, complicating her issues immensely. RAD/Autism? That was the question the staff could not answer. Where did the PDD-NOS end and the RAD begin or vice versa? It isn't answerable.

Finally, the discharge papers list the axis diagnoses. She has a total of 6 axis. (I'm crestfallen and overwhelmed![3]) At Axis I, she has five diagnoses. 5. 5! primary diagnoses driving her mental health concerns and only one is developmental. For mood disorder, they put NOS (not otherwise specified) which simply means, "can't put a finger on it and not in a good way"

We've made it through the holiday with only two rages. But we've got a week of no structure ahead of us that ends in her birthday/new year's holiday. We see the pdoc in the AM whom I fully anticipate to write an order for a clinic stay to further evaluate her meds since she needs V.istaril just for maintenance.

Overall, I'm relieved. Shaking in my boots and increasingly alarmed about the next six months, but relieved. We're on the road to something, somewhere in Sissy's care.

[1] the staff was also glad to hear about the mattress on the floor and plastic bins. The fact that we've removed all harmful items and wood furniture in light of her possible concussion was firmly approved. As is our regimented medication, waking and sleeping times and limited outings and structured routines. In other words, the more institutional we can make it at home, the better. And the psych staff gave us a huge thumbs up

[2] love, joy, peace, patience, kindness, gentleness, goodness, self-control, faithfullness

[3] It just makes me want to jump up and down and scream at the top of my lungs, "WHY THE HELL IS SHE BEING RETURNED TO A HOME ENVIRONMENT!?!?!?!" I am NOT in any way shape or form sufficient for Sissy's ongoing care