Scary Stairway to Heaven, Hell or Purgatory?

First off he is out of the hospital.  (10 days) Did anything improve while there?  I don't think so but I hope so.  Med change was more of a lateral move.  Discontinued Ten*ex went back to Clon*dine. 
So as of now the meds are:
Seroq 100, 100, 400
Lith 300, 300
Dep 500, 500
Cloni .1, .1, .1
Lith level was 1.0 and Dep level was 103
So I feel like I'm standing on a dark staircase.  I do not know which way the stairway is going is it up is it down is it sideways or am I stuck on one step.  I guess only time will tell and I will just keep on keeping on for the whole family.

The Vampires have attacked!

Thank goodness JD is very good about getting blood drawn.  They are testing the lith levels daily at this point.  When he went in it was 1.5  down from (2.2) then, .7 then 1.0.  I have no idea why it is going up and down like that but that might explain why his mood is going up and down!  I'm no doctor but that would be a fair guess I think.  Also the Dep level is off.  It usually is around the 120-122 level and it is down to the 103 level.  So as of today he is still in the psy hospital.  Which means we might not be a complete family for Thanksgiving but after the Thanksgiving from HELL last year i'm not sure any of us would be upset not being together. 

Is my best good enough?

I'm feeling like a big failure when it comes to raising JD.  I think I've tried my best,  but have I?  Should I try this, or that or something new?  Is it more meds he needs or more structure or more attention?  I don't know the answer and it is driving me batty.  The poor kid is dependent upon ME to find him the right doctor the right therapy so that he can live in our family. But does the right med, doctor or therapy really exist for him?  I don't know.  Where's my magic 8 ball when I need it?  As of right now the doctor has done nothing at the psy hospital except draw dep and lith levels (neither of which the nurse could tell me the results of) so now all I can do is wait to here from the doctor tomorrow during the "team meeting". 

6th hospital stay in 14 months :(

Time line:
Sept 10  7 days SC
Dec 10  10 days CC
March 11 10 days CC
March -June 11 RTC
July 7 days SC
October 12 days LR
November ?  CC

Yesterday just went from bad to worse.  It all started at 9:45 am and ended when I checked him into the psy hospital at 2:30 pm.  He was rapid cycle raging meaning he would rage it would end and 15 minutes later the whole process would start again.  But honestly I do not think he was "stable" when he came home from LR last month.  We usually get a good three months not one?  I'm so tired of trying to figure out how to help him when a huge part of the problem is the meds.  Almost makes me want to have them put him on a med "holiday" and start fresh again. I feel like we do not know what base line JD looks like anymore.  But a med holiday is scary scary scary!
On the plus side I was able to drive him there myself and skip the whole ambulance ride to the ER thing this time.  I am so thankful that I have a sitter that will come the minute I call her if she isn't at her other job. 

Screw you LIth*ium and the Horse you rode in on!

The awful gameroom how dare I....

Shitty weekend and it's only 9:46 am on Saturday!  Might want to stop reading now if you are in a Susie F'n Sunshine mood and think you can cure the world!   It all started yesterday afternoon.  I got to the sitter's right at 3:30 after a productive day of Christmas shopping and Grocery Shopping.  The sitter meets me at the door with "JD is in a MOOD"  He's been smiling and ODD all day long!  I was like "thanks for ruining my day"  She was like well you know I had to warn you!  True she did have to warn me that he was off his rocker.  But now days when isn't he off his rocker?  So by the time we got home at 4 he had already decided that it was going to continue ODD HELL.  While the other kids and I were putting away groceries I sent him to the game room to play!  You would have thought I sent him off into some deep dark cave to play with a bear!  Not to the awesome game room with a million dollar worth of toys to play with!  So rage #1 of the evening started finally ended in a hold at 5:15 by 5:30 he was on to rage # 2 which ended in a hold then he was on to rage # 3 at5 5:45 which luckily did not end in a hold I think he had finally exhausted himself.  I know I was exhausted!  I got one major bite which looks so lovely on my white girl skin!  So back to my Lith*ium rant.  JD's levels became toxic on 450mg BID levels were 2.2 a week later after 300mg BID  it was still in the toxic range at 1.5.  But he shows no signs of toxic he is however no why stable.  Anyway Screw you MEDS!!!!!! It is now 10:09 and I hear him yelling "My room is so BORING"  how dare I give my children nice rooms and toys what a mean mommy! 

The Real World!

Daddy Mojito and I have been trying to hire a sitter once a month to take care of the older three so that we can do things with the little three.  And vs versa (I took the big ones out last week)  Most times we do stuff that would be to hard for JD to handle today we just went to an event for preemies.  We had a great time.  I had planned it so we would only be gone during JD's quiet time so the sitter would only have Jose' and Tini to deal with.  But I should have known better.  JD knew we were leaving and had agreed that he would stay in his room and rest.  But who greats me at the top of the stairs manic as hell when I walk in!  JD!!!!!!  Who had been out 5 times to "go to the bathroom" the sitter said.  And who admitted that he did not try to rest he just played in his room.  This would not be a big deal if he did not need that down time everyday.  So instead of three hours of calm re-group time he had 3 hours to get as manic as he could.  So that makes coming home so much fun NOT!!!!!!!! 

when your home becomes your prison :(

family in need of protection~  That is what I would write if I had to fill out a form about our family.  We need emotional and physical protection from JD on a daily basis.  Today it was a broken closet door and screaming so much he scared his little sister.   I thought she was going to fall down the stairs trying to get away from him.  I ended up having to do a hold since he was trying to break his room light  (which he has done in the past).  All the time I was dealing with the raging JD everyone else had to stay downstairs so they would be safe.  How do other people make your home feel like a home when it is really an emotional war zone. The sad thing is this RAGE started because I told him to go play in his room!  Really?  WTF?  This med change and hormones raging isn't conducive to a harmonious family life.  Why does a 75 lb, 10 year old have this family held hostage?   Because of his brain damage!  Today I say FML!!!!!!

And the Ride Continues!

So the pdoc called yesterday afternoon with the Lith levels for JD and according to the lab his level is 2.2 which is almost twice as high as it should be.  (he was showing NO signs of toxic levels)  So we are having to go down from 450 bid to 300 bid.  When I went to get the new rx the pdoc said "buckle in for the ride".  Well that is the last thing I want to hear from him.  I HATE med changes.  Because with JD you never know what is going to set his whole little system into overload.  So we are going to try to stay in our bubble world for a few days and hope that we can do the med change without having to go into the hospital. 

Who's plugged in?



 So my best friend and I were talking today and we came up with a great analogy. We are like power cord power bars.  And each person in our family plugs into us to get what they need from us.  But the problem is the kids like JD who have such special needs that they need to be plugged into us all day everyday if we try to plug other people in at the same time the circuit over loads.  So JD is like the Dryer plug in you know the big one that zaps all the power.  So I know that the last few days I have not let JD "plug" in because my power bar was full of 5 other kids/ and a husband.  I just wish I could figure out how to up grade my energy resources so everyone could be plugged into mommy with out one plug zapping all the power/energy!

Is he 2 or is he 10?

"JD needs to go to the doctor" that is what the Three said yesterday when he raged for the second day in a row.  Really over this whole world revolving around ONE kid.  Why am I so upset?  Because the Baby was sick yesterday and I told JD I need for you to be calm and nice today while I deal with your sisters who do not feel well.  He must have thought I said be a little snot all day who cannot settle on one activity then throw a hell of a rage for an hour in the afternoon.   And do you want to know why he has raged two days in a row? Because I have been more than 5 feet away from him and trying to make him regulate by himself.  Why would I do such a thing.  Well once again let me remind you he is not my ONLY child.  Tuesday Jose needed me to take him to the doctor and yesterday the Three needed me.  So how do other people do it.  I feel like he is a perpetual 2 year old who thinks that he is the center of the universe and if he isn't then he will throw such a rage that he becomes the center of the universe because he demands to be.  And I know if I do not regulate myself he cannot regulate himself but dang sometimes I have to show emotions!