Captain's Log Stardate Day 22

 Captain's Log, Star-Date Day 22:

Today had it's ups and downs, the same as every day this week. The boy child in sickbay has been gnawing on his healed arm today. There seems to be an issue with his meds. After all, he went two weeks with his hurt arm in a cast and not once did he touch this other arm until yesterday. Today his hand was swollen to what the nurse has deemed "Puffy Monster Hand". After an investigation, we (Tyler the RN and I ) have determined it to be a compression issue. We feel we resolved this issue with Tyler's manly scissors just cut all the compression sleeves off. We put on a new Posey sleeve with thumb hole and a velcro IV cover on Puffy Monster Hand.
Still the boy child feels compelled to scrape his teeth on it. So difficult to watch him go from happy to manic and do nothing.  I told Tyler I'm convinced it's some med that is missing that keeps him from doing OCD/manic behaviors. He is not exhibiting these behaviors in the mornings. Being the Captain and not being able to make things better is not a good feeling.

Also today, the Lord has made his presence known to me. I always feel him near but today he used others to show himself.  I needed this encouragement, and show of strength to gird  up my loins for the fight I know is coming ahead of me. 

Today's first patient sitter for the boychild was an older lady with a gravely voice. Her name was Willie. Same as a lot of the times, after a bit of time in the room with us, questions are asked.
She wanted to see pictures. Willie gasped. I told her about my year of trying to get Oklahoma to be willing to send him to Texas. And now that they are, but Texas is rightly upset with Oklahoma and not interested in playing ball.
I told her my tentative plan to threaten to sue them so they'll somehow make Texas work to shut me up. Turns out Willie's best friend was in an abusive relationship and couldn't get back into her home once she left, to get her work clothes. Willie's apparently spunky because when she called police and they said they couldn't help, she called Senator Tom Coburn's office and demanded help.
Willie ended up with a police escort down the highway to her friends house to get her clothes within 3 hours. Oh and the checkbook.
Also, Willie's mom is 91 years old and in a nursing home. She fell and hurt her knee. A few days later when Willie checked on her she could tell it was bad and took her to the ER.
Her mother's knee cap was broken and is permanently damaged. Willie demanded the nurse tech be fired who had called to tell her about the fall but never reported it to the RN.
The facility fired him but Willie went further to the Governor and made sure his license was revoked. Spunky.
Willie said I needed to take this to the press and to the state capital and get the governor involved. I'm thinking this is sounding good. This could be why God set all this up last year in early December when I went to the capital.

Patient Companion number two was Allen. Just like my dad's name. And his last name was my grandfather's name. I think I can remember that.
He stared a lot. I talk to the boy child almost non-stop as I feed, clothe and change him. I'm sure to some people it's odd. But if it was me, I wouldn't want to be ignored and I cannot know if the sitters speak to him after I leave.
After I feed the boy child some lasagna I brought from home, I am telling him about the wonderful lady from church who made it. Telling him about her, and how I've known her my whole life.
How kind she was to make us food and bring it so I can be with him all day every day.
Allen asks what church I go to. Turns out he goes to Park Plaza in Tulsa. Small world.
The lord allowed me tonight to leave the boy child in the hands of fellow brother in Christ so I could go home and make a Halloween costume and feel he was in good hands.

"Exhibit A Your Honor"

Back at the hospital I'll give you a Perry Mason version.

Court was so empty today and it's usually all Jerry Springer-ish, so that should have been my first clue something was up.

Apparently they weren't even starting until 2:30pm--we were scheduled for 1:30. We were 30th on the docket and they were starting at number 18. 

Our lawyer says he has an emergency hearing in Claremore and has to leave. I'm sorry, WHAT?!

So he handed us over to a lady in a pink shirt who I already saw trying to "help" another family in a not so inspiring way. Luckily, our lawyer told her to "just unleash her" & let me do the talking. 

The DHS worker came in--said the meeting yesterday (that I chose not to attend--I felt it would be doing their jobs for them--again. And also allow them to think I was okay with how things transpired--which I am most certainly not.

She said out of state was not even brought up.

And they asked---wait for it--IF HE COULD JUST GO HOME NOW.

Umm no. They are really stumped. Someone may actually have to leave an office and DO THEIR JOB.

We ran into Carson's attorney. I had emailed him with my attorney with a full & complete update on Sunday evening. Complete with a couple of pictures. 

I think those made it to the Mon meeting I skipped. 

I told him we were 30th on the docket and perhaps he could throw his weight around to get us bumped up--then I flashed a big smile--I've been told that helps.

And I guess it does--we went first. Dimples for the win!

The judge started off saying, "We thought Rose Rock was bad..."

I asked if she'd like to see my pictures she said no quite emphatically.  I had made copies and sorted them but no ziplocks at court so all attorneys and DHS worker got theirs in handy dandy Bio Hazard baggies from the hospital. 

At first I was truly worried she didn't want to see them--but she said the lawyers had forwarded on my email & pictures.

I was perfectly content knowing I had gotten my main concerns across in that email.

We discussed hus meds and adjustments--she was very interested in that aspect.

The judge mentioned the ambulance and Carson being alone and it was dead silent. Then she huffed, "ABSURD!"

More silence. She was not in a mood to be trifled with today. 

I quietly shook my head and said, "Same." (Well I didn't really but in my head I did.)

We discussed the EXCELLENT care he was recieving at St Francis Childrens and how as horrible as this was, it may benefit Carson in untold ways.

She went on to ask if OCC was involved--it wasn't--it is now. She wanted to "make it OCC wide". 

Carson's attorney asked if we could note the judge's disapproval--she didn't answer.

The judge worried outloud that out of state care would be harder to monitor his care/health.

I let that sit & then assured her I had enough family and friends that that would not be an issue.

I told her programs & opportunities I was looking at for my senior in high school, that would keep me interested in Texas for more than occasional visits.

She asked if the meeting yesterday addressed out of state--no. "Of course not" she said with disgust.

Judge turns to Carson's attorney and says, "I'll allow my disapproval noted on placement."

I'll have to have my lawyer friends verse us in how much weight that carries, but she said it with authority and pencils moved rapidly.

She wondered what places are available in Texas. I left that to sit and quietly but then pointedly started listing them & where I had been. 

She said, " I hate to put you to work, but you can look into that for me." 

I assured her it was my job as his mom  and my pleasure. 

She set a court date for January and  we adjourned. 

Done & doner. Pink shirt never said a word but thank you & was practically running to keep up with me as we left the courtroom. We got out in the hall

and she said, "He was right--you did great!"

Thanks Pink Shirt. 

Just The Facts M'am

It's been a long 6 days. So if I'm repeating myself--skip down.
The facts:
Carson was transported by ambulance an hour away, to the St. Francis Children's
hospital Saturday night. He was in only a t-shirt and no socks or shoes.
AND HE WAS BY HIMSELF.
He woke up at the hospital terrified, restrained to a bed.
The staff was only told by the ambulance that he had been dropped off at a group
home 2 months ago. That was all they knew.
The staff didn't know ANYTHING about him. If he could speak, swallow or what he
was there for.
They inspected him from head to toe finding bruises, sores and of course his arm
which was a place the size of small remote control to a TV. It was one third black, dead skin.
He woke up to find about 6-8 people/security in his room and popped his restraints
from the bed.
They got him in the tub but he was scared of everyone and sat in the corner crying &
screaming. Which happened to also be on the stopper so they couldn't drain the tub so it flooded the entire bathroom & up to their knees in the room.
The hospital staff got a Posey bed for him in under 30 mins after fighting him for so
long.
They held him down, got an IV in for antibiotics & severe dehydration--he blew a vein
in the first one---second one had to have 2 velcro covers and someone to hold his arm
still while he had the 1 hr treatment every 6 hrs. (Monday he ripped that out & his wounds started to re hydrate which was not fun---but his proteins were low and he was pretty dehydrated so he is eating some & drinking which is good.)
I was out of state and didn't know he was alone until late Sat evening. I arrived Sun
morning before he ever woke up. Apparently, staff thinks he's a different kid now.

More facts:
God is very good. This is a horrible situation but it's being handled by THE best people
in the world.
Carson arrived at shift change when extra staff were there. As scary as that probably
was to him to be surrounded by strangers, alone, it was a blessing.
Carson & I have a few favorites now. And Carson is DEFINITELY the favorite on his
floor.
He has had a "Patient Companion" since he arrived who sits in the room & is never
allowed to leave without some other staff  there.
God has blessed Carson & I with an array of amazing sitters/companions who have
heard Carson's story and prayed for us, been touched by him and have asked to come
back to be with us.

The Child Life Specialist told her mom about Carson and she mailed him mardi gras
beads--he IS topless most of the time. The therapists and staff have all brought Carson
toys, treats and always come in asking if they can bring something special in for him.
And no offense to your friends, but mine are pretty dang special. They have taken care
of me quite well. A scarf to keep warm--some tea to keep my hydrated--all kinds of treats & snacks for Carson--Aquaphor for his severely chapped/dehydrated lips--
stuffed animals for him--bringing me food to try  and eat, stuff from home and just
loving on the two of us. I don't know that I'd be sane on day 6 without all that.
The MANY doctors and specialists I've been working with while up there are amazing
& care sooooo much for my son. They are going above & beyond. They are very
protective now of Carson. Once I was there, they saw the situation for what it was
and have been protective of me too. I'll take it!!!

They are angry like I am---they want him in Texas like I do--and they are fine with
keeping him here as long as need be.
DHS & Tahlequah kept texting me and calling. I refused to answer. I did not have time
for that. I have literally barely sat down.
And my momma taught me if you don't have anything nice to say, you shouldn't say
anything at all. And so far all I can think of are four letters words. So I have chosen to
remain silent.
They know where he is. They can come.
NO ONE came until Mon when his therapist from Tahlequah came and tried to warn
me about Carson as I was leaning in the bed trying to give him meds.
"M'am, step back! He is dangerous, don't get so close! I wouldn't do that!"
I just looked at him. The other 6 people in the room knew who I was. If I'd had the
energy to laugh, I would have.

But he later brought good info to the table with some stuff for Carson to try---saying
the biting even though started by another kid, has now become a sensory thing for Carson and that we have to figure THAT out to keep this from being repeated.
In turn, I showed him gross pictures of the arm and told him he could tell Tahlequah
Carson came in with lice. I felt this was a fair trade off. He called everyone from the
parking lot and Tues morning Carson's DHS worker showed up to see him.
I made her look at the pictures. (Wound dr has never seen anything so bad on a kid)
I told her I was pretty sure I could sue if I wanted to. That you wouldn't send a verbal
15 yr old who tried to commit suicide in an ambulance by themselves and say "Tell
them your medical history when you get there & what's going on." Umm no.

THEN, Wed morning, a social services investigator came to interview me. An official "on
the record" recording while  I sent her all the pictures I had from Sunday & she took
some new ones as well. She was outraged and said the only way he'd go back was
with one on one care. But I'm pretty sure OK has exhausted all it's resources.
I don't know how this isn't proving they have nothing here for him here.
As much as I feel like Tahlequah said ahead of time they didn't think it'd work & I did
as well---this is UNACCEPTABLE. I had been there 2 weeks before---how did this
happen so quickly unless you didn't bathe or touch him for those 2 weeks?!
As sad his condition is, I can't imagine this not helping his case for moving out of state.
I'm pretty sure being in the hospital for more than a week is expensive.
If I sue you---pretty sure THAT is expensive. You should have just moved him when I
asked nicely.

The wound specialist really has had to bring in other people and be creative with
healing Carson's arm.
We are NOT doing surgery now, the dead skin is off. I will spare you the Zombie like
details of how that happened. The skin underneath is pink and has good blood flow.
The doctors want to stress him as little as possible. They came in Wed and made a cast
of his arm, (while he was semi-sedated) and then cut it off and sent it across the west
coast to make a mold of it. It will be a silicone sleeve that will fit over this large Mepilex
dressing/band aid which has silver in it to speed healing. Then some Houdini straps. I 
have discussed several options with the doctors---maybe an elbow stabilizer on the
OTHER arm to keep him from removing all the bandages etc.
Still needs to be changed once a week.

Yesterday OT came in and put a patch on and then a special compression bandage
that is designed to sort of help autistic kids.  (lessons in autism 201 coming soon)
He has been keeping his arm wrapped in a shirt, towel or blanket.
The drs and I are finding he LIKES the compression. He left it all on for 3 hrs yesterday
and so I'm hoping that's a good sign of things to come.
He loves his Posey bed. Google it. Again--that's explained in autism 201.
He loves Nutter Butters--we've had quite a few incidents where he has escaped the
bed and grabbed a big bag only to fend me off  in a corner while he ate the entire
thing.

I've gone home bloody a few times. That made for interesting walks to the parking lot
late night. I've only left 3 times, but that has to change soon because the other two
are crying for me (mostly Jack) and we go to court Tuesday.
I'm the only one who has fed him a meal yet.
I just missed giving him his meds for the first time last night---and let me tell you he is
on A LOT of meds.  The head of psych is personally on a mission to fix that for him.
She said there are only so many landing strips in the brain---his have multiple stacked
planes waiting for take off doing him no good at all. People have thrown new meds at
the problem only to create a traffic jam for his brain.
I'm sure I'm missing some stuff but that's those are the main things going on.

I have to go email my lawyer but if you have specific prayers---pray he allows ALL his
injuries all over to heal. (He has pressure ulcer/wounds too)
Ask that he keeps feeling safe where he is & I keep meeting great doctors that care and are continued to be intrigued by Carson.
Pray for court. Pray something new happens for him.
I don't know how much longer I can do the hospital routine of being there all day till dark, but I want to.
I have my vitamins, blood pressure pills and unsweet tea. I'm surviving. We won't talk about how messy my house is, but I can do survival mode, I've been there before. I know how to do this.
Just call me Rambo.