Unfun Updates II

So yesterday I promised to get back to you with all the unfun updates and in the last 24 hours it has become worse!
So I will start with a week ago.

Ash Wednesday - Church was nice, got home and Robby threw up for about an hour and a half and then continued retching throughout the night. His behavior was so irratable for the few days before that we figured it was the change in Risperdol.

Thursday - Robby stayed home from school and the nursing facility. We had an appt later that night to see the physchiatrist again. We decided after a long discussion to switch to Clonipan. This would help with his anxiety and the seizures all in one. It will act like a backup seizure med to the Lamictal as well so hopefully we won't see anymore seizures for now. We will also only do the Risperdol at night to help with the sleeping issues.

Friday we attended the Autism conference, we dropped Robby off and prayed he would not get sick so we could attend this very important clinic. (see two posts below) He did not get sick. Rob and I found out we need to start signing with him in hopes of decreasing the behavior and also in hopes of him verbalizing more.

I never made it to the pharmacy Friday to get the scripts filled for the Clonipan and Risperdo,l so Saturday morning I dropped them off and went across the street to my office. I worked for 2 1/2 hours and then went to the pharmacy in a rush as usual because we had a 1:45 appt with Maddy's physchologist. When I got to the pharmacy they said that Gateway (our secondary, Medical Assitance) would not cover the Clonipan and that they had no Risperdol until Monday. I wasn't worried about the Risperdol as I knew I had enough to get by but I was concerned with why Gateway would not cover Clonipan. It's an older drug so I figured they would. I then proceeded to get in the car and call them on my way to Maddy's appt only to find out that I was no longer listed as Robby's head of household and they refused to speak to me about my son and his medical condition and medicine.
WTF!
Sorry I can't spell that out on here but I am sure you know what I mean!
I freaked, literally. I hung up and called their member services line over and over getting the same response each time. I finally asked to speak to a supervisor and was told they wouldn't put me through to one because they could not speak to me either. I asked who was listed as his head of household and was told again they couldn't release that info to me!
I really flipped then. I said "Don't you understand, my son is 5 and cannot walk, talk or barely see, if he is listed as his own head of household then there is a huge problem here! "
They again told me there was nothing they could do and I would have to wait until Monday to call the Department of some state agency. I explained to them he was a 5 yr old child with seizures and I could not wait until Monday and they needed to do something NOW! Then I started talking like a sailor becasue I could no longer contain my anger, frustration or tears!

I then told them that if they could not talk to me then "how comes the special needs unit from Gateway just called to speak to me the other day? In fact, they call me every week to check on Robby and how he is!" They acted like they didn't even know what the special needs unit was. I told them I was calling our case manager and they would hear from her on Monday. Because Sarah our case manager at Gateway is awesome and I knew she would take care of this issue for me! Which she did.

I ended the day by calling Gateway one more time and pressing the button for the pharmacy instead of member services. The lady in the pharmacy must have been a mom because she quickly apologized and gave us a one time exception to have it filled. Too bad our pharmacy at that point was closed and I could go nowhere else because as a hospital employee I can only use our pharmacy at the hospital. I called the pharmacy first thing Sunday and they told me sorry but they could not fill it until Monday because Gateway was closed on a Sunday.

SIGH.... I couldn't get mad again so I said thank you and hung up.

I got the Clonipan Monday, and then also fixed the head of household issue with the state. By the way I gave them hell! I told them this was, to me, considered a huge medical error and it was totally unacceptable! I will be calling someone higher up with the complaint too this week.

I was so wired Monday I couldn't hardly function.

Tuesday - Good day, Until 5:40 when Madison was at church PREP. I picked her up at 6 to find a very tired, sick looking girl with a belly ache. Her teacher, a friend of mine from the hospital, said she was complaining of belly pains. We got  home she didn't want to do anything but a shower and rest. She wanted to eat ramen noodles and while my mom and I advised her not to eat them she insisted it would be ok. I checked on her later and she said she was "tooting" and "it was stinky." I figured she just had gas because her belly was so solid and hurt to touch. I gave a her a stool softner (the first pill she ever swallowed, she did so good!) and then... around midnight she started the bathroom run, and then all of sudden, while I was sitting with her, her little body decided it was time to throw up.  And then as I was rubbing her back and she was sick from both ends, I remembered why I didn't go into nursing!  (Sorry this post is gross, trying not to go into too much detail)

This went on all night and this morning she felt better but still was in the bathroom until it was time for me to drag her down to dad's so I could get to work. Poor kid, I actually had to put a diaper sample, one I had been given for Robby, on her so in case she had an acident. Poor kid.

Now she is resting, no school today for her, and probably none for the next two days for both the kids as the next blizzard is supposed to start tonight!

Fun, fun, fun! Why did I ever wish for snow. I hate it, when will that hot blazing sun come out?! I want to de-germ the house so bad and open the windows!