Tuesday, February 23, 2010

You've got to be kidding me

Today I got ahold of the lady in charge of filling out the form that was needed to be faxed to our insurance for the Meridell admission.  She filled it out, but the doctor was unavailable until tomorrow morning to SIGN IT, so it has to wait until 8am.  So I ask her about whether or not Eli was going to be discharged tomorrow (Wednesday).  He is in NO SHAPE to be discharged, but this little rumor has been floating out there and I hadn't been able to get anyone to tell me yes or no, and this time it's no different. The leading therapist has no clue if he will be discharged or not.  So I call later, and talk to another therapist/nurse.  She has no clue.  I call hospital administration multiple times and get no call back.  But then my insurance contact calls me to let me know she had been informed that Eli would be getting discharged tomorrow. 

They let my insurance person know before letting the parents know.  And then, as if that isn't enough to make me see red, when Eli calls tonight, he is jumping for joy because they had been hyping it up to him all day that he was going home tomorrow.

They had the absolute NERVE to discuss this with a 6 year old child, but couldn't tell me that they were discharging him??!!  Of all the unethical things to do...I believe this is one of the best I've heard.  They told a MINOR what I'd been calling and asking them all day! And you know why? They didn't want to deal with upset parents.  They want to discharge him and get him out of their hair.  They don't give a crap about his health...They know he is worse off than when we checked him in and they simply don't have the knowledge to be able to help him, so they refuse to deal with it and send him home. 

And they are still too lazy to sign and fax the Meridell paperwork, so that slipped right through our fingers.  The only place that I have faith for him to go and get help, and they don't have the time to send a fax.  So what is our game plan?  I don't know.  We have about 3 different options, and only time will tell exactly what it is we end up doing.  I'll blog as soon as I know.

Monday, February 22, 2010

My pet peeve...Incompetent, stupid people - the Shreveport type

Where do I even begin here...Lets see...

I called this morning to "find out where we were in the Meridell transfer process".  I was trying to start out nice and cordial enough, but needed to do something to get the ball rolling.  So I talked to person number 1 who had no idea what I was talking about...then disconnected me in an attempt to transfer me to person number 2.  I called back, was able to talk to person number 2, and she had no idea - even looking at his record.  So they transferred me to the voicemail of the overseeing therapist and I left a message...then called back and proceeded to leave several messages throughout the day with no returned call.  I called and called and called all day long. 

So then I started calling Meridell, and after some phonetag was able to get in touch with the guy we worked closely with last time, Jerry.  He is top notch, and remembered us...remembered that I stayed with my parents in OK, was super sweet and sorry that we were back on this track again, but he was fantastic.  He was honest and said that the way the hospital here has approached them and the way they were going about things was screwy.  They totally bypassed the insurance route and admissions process and just called the admissions line at Meridell.  Weird.  Brentwood has the form to submit to the insurance, and then the insurance handles it from there...but they honestly are flat out too lazy to fill out the paperwork.

So I got the paperwork from our insurance liason, filled it out for them essentially , gave them a blank copy because THEY are supposed to be the ones to fill it out, and I even typed up a THREE PAGE WORD DOCUMENT giving them additional information to help make it easy for them to fill it out.  Ummmm yeah.  So I had all that and I just needed to get 2 minutes from the therapist to drive all the way over to her to give it to her. 

The day was going by with no phone call to set up a time to do that, so luckily Norman called the hospital administrator and got someone to listen.  The administrator had a patient rights advocate call me, and she proceeded to get an earful.  She was shocked and frustrated at what had been going on, and was apologetic...blah blah.  I told her that I was absolutely regretful of our decision to take him to that hospital, that the staff is incompetent, I never get a phonecall returned, and nobody in that building had an ounce of professionalism and they should be embarassed for what they do there.  I also told her that it is horribly inappropriate for the doctor to never talk to or meet with the parents of a minor child, and that we expected some change.  We expected someone in that building to pick up the phone and DO something.  I told her I even had done the work for them as far as this form is concerned and that they were too lazy to come downstairs and pick it up. 

Well, by 4 pm I received a phonecall from the therapist and I drove to the hospital to give her the paperwork.  And we proceeded to sit on the couch and I went over it all with her.  Everything.  How HARD IS THIS?!  Then she basically made a phone appointment with me in the morning to make sure I was available to be reached for her questions when she filled out the form in the morning. 

Then she tells me that on Saturday (this past Saturday) they wrote up the discharge paperwork for this coming WEDNESDAY. 

So lets sum this up.  They double the medication that makes him bounce off the freaking walls...do away with the medication that helps stabilize the activity level...get him to a non-functional point where he won't look anyone in the eye, cannot hold a short conversation, literally cannot sit still at all, and in fact tried to crawl UNDER the chair during our family session, and they are going to discharge him in two days, 10 times worse off than when we took him in.  And because they did not contact Meridell from the get-go, we are that much further down on the wait list. 

Tomorrow the hospital is SUPPOSED to fax the form in to the insurance to get approval on the authorization to transfer him, but will they do it? I don't know...if I have anything to do with it they will...because I will call them 18 times again tomorrow like I did today. 


Update 2-22-10

Things are not going well...and this is going to be a tough week.  We have a major fight on our hands with Brentwood Hospital.  Eli is doing worse now than when we took him in 12 days ago.  We have found out that the doctor put in charge of his med changes is not a child psychiatrist, but instead a geriatric doctor. Yep.  He needs a specialist, they assured us he would be in good hands, yet they have completely dropped the ball and screwed up his medications to the point that we are about ready to break him out of there.  It's not that simple though...I signed a form at the hospital that if we took him out before they were ready to discharge him, we would be 100% responsible for the several thousand dollar bill.  So we've got to go through the right channels and force their hand to transfer him to Meridell.  They are dragging their feet and not wanting to transfer him, even though they know they are not equipped to be able to get his meds right. 

This hospital is a joke.  This town is a joke.  The professionals are unprofessional.  There are no child specialists... there are those who claim to be child specialists, but they aren't. 

There are two therapy groups in the Shreveport/Bossier City area, and upon first glance they look legitimate.  But they are in no way legitimate.  Their "therapists" are COLLEGE KIDS who have been given a course in ABA therapy.  Yes, you heard me.  COLLEGE KIDS.  ABA therapy and any therapy in general is a highly specialized area that is not taught in a few weeks course!  When I was in college I had some part time jobs, but none of them involved trying to shape a child's life or help them learn appropriate behaviors. 

So for the sake of any person who is doing a google search to find therapists or child psychiatrists in Shreveport...let me save you the legwork and heartache...there are none.  We are trying to get Eli transferred out of here as quickly as possible, and that is all I can focus on now.  If we are able to help Eli at all we have got to get him out of here. 

Wednesday, February 17, 2010

Update 2-17

They upped Eli's dose on the new med Intuniv to 3 mg, and he seemed much more calm and in control of his feelings and emotions tonight.  There were a couple of rough spots, but he was SOOO much more managable than he has been.  The two major downsides are that he told the morning cafeteria lady to "shut up" - which just boggles my mind.  I don't believe I have ever heard him say that...but when he's defiant and in a strange place, I wouldn't put anything past him...  And he didn't eat a bite of dinner.  We have another family meeting in the morning, then a meeting with his NEW elementary school and then an appt at 5 with a child psychiatrist who MAY (keep fingers crossed) be able to accept him because of the sepcial circumstances...  So tomorrow will be a busy day...  Stay tuned...

Tuesday, February 16, 2010

Transferring to School Number THREE

So here is the breakdown of what happened educationally for Eli over the past...well...since January 7th.  Yeah,  all that I am about to explain has occurred between January 7th to February 16th. 

So we moved her right before Christmas and since we came from a good public school situation, the only logical thing to do (we thought) was to find out what school we were zoned for and get him enrolled so that he could get started right after the Christmas break.  Well, we went into Kerr Elementary and got him enrolled, and then I proceeded to have a heartattack every day during Christmas Break over the school and the bad feelings I had about it.  Namely the fact that they would be throwing him into a classroom with no helpers, no aides, no nothing.  Basically they would be throwing him to the wolves.  I was sick and I stressed...and stressed some more...so we made the decision to put Eli in a private school.  They at least had smaller class sizes, which is a huge, HUGE, HUGE thing for him.  He needs a smaller class size with more individual attention.  I was thrilled, sure this was the answer...he even could go to chapel once a week and learn about God right along with his math and English.  Our prayers were answered! Silly me. 

We knew it might not work, but we didn't know how rigorous the curriculum was and how demanding they are.  The term that has been used a lot by a friend who has a child on the spectrum is "cookie-cutter".  They were only used to "cookie-cutter" kids who were all the same, who were able to sit thru their 40 minute lessons.  I can't fault them for that...That is who they are used to teaching.  And Eli isn't cookie-cutter.  He is his own little person who has trouble sitting still for very long, who loves to talk and jump in and be part of the discussion.  He's active.  But he LOVES school...he LOVES to learn.  And although we thought that school might be able to handle him, at one month, they determined that they were not a good fit for him and asked us to find him a new school.

So I contacted the Louisiana State Board of Education.  I explained everything from start to finish.  They gave me a contact person for Bossier Parrish, which is where we are zoned, so I contacted her.  We decided that the best school for Eli would be Bellaire.  It is only a K-3 school, smaller class size, more teachers help, and they have an autism classroom that he could go to on the days he was having trouble in the mainstream classroom.  Perfect.  But after that lady and I hung up, she did some talking, and the school board and Bossier Parrish decided that nah, he didn't need all that.  He'd "DO GREAT AT KERR!"  Norman and I fought.  We tried getting letters from Barksdale to get the transfer approved that way.  I spent a lot of time on the phone and in person trying to tell them that the main issue with autism is TROUBLE WITH CHANGE.  We were going to have to transfer him to his second school in a month, please lets transfer him to the RIGHT place!  But it didn't work.  They did reassure me that if Kerr didn't work out THEN they would send him on to Bellaire, but not to worry...Kerr would excede our expectations and he wouldn't have to make another move. 

So I filled out the paperwork...again...we went shopping for uniforms...we bought school supplies...we got him as emotionally ready as we could get him to change schools...and he changed to Kerr.  He started there on February 8th and attended there thru the 10th.  Three days.  I won't even give you my first impression of the teacher and how short-tempered she seemed.  I was not feeling good about this at all. I also was greatly disturbed that my child had to make a Mardi Gras float for the school parade.  WHAT?!  I'm sorry, I won't go into my thoughts on Mardi Gras, but I don't view it as child appropriate.  So anyway...

Well, you already know about him needing the med change, so he went in-patient the evening of Feb 10th. 

All this time I've been wondering if they were going to call me about a meeting...You know, he supposedly has a "team" who will work with us to make sure he is doing well.  Well, they called me today.  Yep.  And guess what?  They aren't able to meet his needs at Kerr....  *gasp* REALLY??!!!  What was your first clue??!!  So after 3 days there...and finally learning how to get to that classroom...HE IS BEING TRANSFERRED TO BELLAIRE, THE SCHOOL WE WANTED IN THE FIRST PLACE!  The school THEY agreed was best for him, but the one THEY refused to approve! And that is all that was needed.  One SIGNATURE.  ONE.  To avoid every bit of this.  Eli has no idea, and he is going to HAVE. A. COW. 

Nice.  So I have a meeting at Bellaire on Thursday.  Oh I will show up nice.  But rest assured all bets are off.  I am not going to be run over.  I am through being the parent that nods and agrees to the point where my child is lost in the system.  Games are over.  Bellaire is it, so they better get their crap together.   They have one shot to get all the chaos fixed.  ONE. 

So after some phone calls from the school administrators and from Bossier Parrish school board people, I get a call from the school nurse who wants to discuss health concerns.  Yeah right.  They're concerned.  All I'm concerned with is that my child who is smart, who can read and write and learn is able to do that.  He will not fail because THEY do not want to bother with him.  Our next phone call is to Senator Landrieu's office. Norman managed to make quite a few friends up on the Hill last year, and he will use them.  Perhaps we will have to get a lawyer.  We are not going away, and they are going to have to do their job. 

Change in Meds...

Well, as we knew when Eli came home from Meridell last May, the medication combination he was on that was working so perfectly would not work forever.  His little body is so small and is growing and changing so much, that we knew it would have to be adjusted...that was never in doubt. 

I would say around Thanksgiving time we noticed that things were getting harder.  He wasn't able to be redirected, he was a ton more stubborn, his eating habits were getting worse and he was refusing to eat things that he knew he even liked.  Our saving grace was his school in Virginia and the wonderful teacher and team he had there.  He was doing wonderfully, and he got what he needed.  They were so good at Fort Belvoir.  Then we moved here.

My anger at the military side of things is through the roof.  They "okayed" us to move here, supposedly checked the resources to make sure we could get care, and signed off on sending us here.  It is apparent that just as usual, they did as little to get by and to send their military member where they wanted to send him, totally disregarding the fact that there is a procedure in place to prevent such a mess.  My anger at the agencies I called before we got here is through the roof.  The therapy place...the ONLY therapy place here assured me that once we got here, we could get in within two weeks to do the initial consult, and would be starting therapy within a week to two weeks after that.  But they told me to wait until we got moved to make the appointment...which I did.  But when I did make that appointment they informed me that I would be placed on a waiting list until March.  This is a child who needs therapy more on a daily basis than anything else, and now we are having to wait months to get to the initial consult. NOT good. 

In the meantime, Eli is needing some medication adjustments.  I needed to get in to see a child psychiatrist to get that started, but guess what?????  There are approximately 4 child psychiatrists in this area who work with autistic children, and 3 of them aren't taking new patients...and the one I could get in with, graciously got us in on MARCH 24th!!!  So yep, we're still waiting on that appt.

So based on the fact that moving and changing environment is hard on autistic children, coupled with the fact that we moved to a place that has zero services for nearly 4 months - and that the services here are severely limited, it has been an absolute disaster.  Oh, and how could I forget the Louisiana School System.  AWFUL.  Flat out embarassingly  awful.  All I can say is that when we leave this place, I swear to NEVER bring my children back here.  EVER.  We have watched Eli fall apart before our eyes, and we have been unable to do anything to stop it.  So we were left with no choice last week, when he was absolutely in dire need of some medication changes, to have to do it inpatient. 

It's hard to explain that experience.  Knowing that it should have been prevented...knowing that it shouldn't have had to come down to that.  Anger at the fact that I cannot fix things for him.  It's frustrating.  He cries and begs to come home in the evenings, but he can't...not until they figure out the meds.  It would not be good for any of us, and it would only be hard on Eli to have done all these changes but not followed through with making sure they were the RIGHT changes.  I think the hardest thing I ever had to come to in my life was realizing that getting him help is the best thing I can do as a mother...denial does nothing but hurt Eli.

So the latest on the situation is that Eli has been inpatient since Wed. Feb 10th, and they have been working on changing his medicine.  I talked to his doctor just a few minutes ago, and she wants to make a few more changes, but she is pretty confident that they can get everything done there and not have to go to Meridell...at least not right now.  Only time will tell...I'm not sure that I can believe that.

For now though, we are still on those waiting lists, and hopefully we will be able to squeak by until they can start therapy here at home and get the other things started too.  Norman is working on getting us transferred to San Antonio this coming Christmas/January time where they have an abundance of resources and help, which would be beyond wonderful.  I will be updating Eli's blog more frequently, and I will be sure to let you all know of any changes and/or progress that is made.  Thank you for the prayers...they are truly appreciated and at times I think it's all that keeps me going...