On a good day, parenting will test the integrity of your character. On a bad day, parenting will test your will to live. Parenting children with trauma histories will cause you to test the integrity of everything and everyone you thought you knew, for the rest of your life.
~J. Skrobisz

Sunday, December 26, 2010

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"


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


Angela :-) said...

Hugs! How many days until Orlando?

Angela :-)

Lisa said...

Wow!! What a holiday season you're having.

You just confirmed what I've suspected about my RAD/FASD son for YEARS with no help in sight - he would and has done so....much better in an institutional environment. He destroys everything in his room so we go bare bones and get judged. He was in a adolescent psych facility for 17 days (the max they could squeeze out of insurance) between Thanksgiving and Christmas 2 years ago and he was thrilled beyond belief. Yes, he had a few episodes of his usual behaviors, but the longer he was there, the better be became and when they tried to give him a 6 hr. pass after day 4 he ragesd the entire time (disconcerting at the very least). I truly believe the more rigid our structure is, the better he does too - but HELLO....he's not our only child and doing this day in and out month after month, year after year is too much for a mom and dad. It is also unbelievably cruel to subject all the other kids to this kind of structure. It is a mini-prison in my house now - for them and me. We are not made for this kind of life. Heck, I wouldn't even want to work in this kind of environment for 8 hrs a day, let alone live in it.

Good luck - keep jumping through those hoops, at least you have options now. We are still being told how our son is not that bad.

Ashley said...

Oh Integrity... You have gone above and beyond for this little girl. I think they're right and that she needs that degree of structure.

Kelly said...

You continue to amaze me.

Debora said...

I.S., I continue to pray for you all. Sissy has been on my heart a lot lately. I know it's hard to realize that Sissy does better in an institutional setting. Ugh. I hope you all had a good Christmas and are making it through this unstructured vacation time. Our girls are going *pretty* well. Yesterday was weird behavior for the majority of the day, but Christmas went well.

I'll continue to pray for Sissy and all of you. My heart breaks with yours; I wish I could do something to help!


Anonymous said...

Are you planning to put her on any kind of birth control when she hits puberty?

Jeri said...

It never fails to amaze me when the "experts" shake their head and say,"This is the toughest or one of the toughest cases I've ever seen. I really don't know what to tell you to do. Oh and good luck." THEY work on shifts and get a break, THEY have trained for umpteen years to know what to do and exactly how much of it to do. WE are the lay people yet we work 24/7 and THEY put roadblocks up at every turn. I'm sorry but Sissy and my son need institutional care where at least the caregivers can change out and recuperate. Even in the "manifestly dangerous" program at our state hospital, even with people that have "been there,done that" for years, my son is an enigma. He assaults them, breaks windows, lights, etc. As much as I miss my son, I do not miss sleepless, fearful nights. Hoping for all of your sakes that something comes up very, very soon that will benefit the whole family. hugs

Tara - SanitySrchr said...

I'm lost in some of the jargon (Cafas, PRTF, PDD). I'm relatively new to the mental illness arena.

I pray things get better for you! I'll actually get to meet you in person in Orlando.

p.s. Sorry you're Site Meter has now gone absolutely bezerk...I was 25 posts behind. :)