Friday, March 25, 2011

A LoNg WeEk

I am without words for this terrible no good very bad week ALONE without the Hubster, Exhausted, Spent, Kapoot, Anxiety has been bad, my eating habbits have been lazy man foods of ordering out or just eating plain ol spaghetti for dinner, lunch breakfast...sigh. House is dusty and dust bunnies are showing there furry faces in the corners..Laundry is still not done...
Well the worse drama this week has been two things...The Seizure madie had at school yesterday and the ambulance that the school called...(which I signed off on we did not need it) and the battle with Ketocal and the 500+ Dollars I charged on the credit card that we will already be paying off for 50+ years...after we come to find after ordering 3 cases..18 cans..that the pharmacist at target rang it up as the price per can per case!! 37 bucks for 6 cans I was thinking we had actually had some success with insurance! SO come Tuesday when we were nearly out I go to Target to pickl up the cases that we ordered...100 bucks in hand ready to go..
They kinda looked at me and asked if I was sure that I wanted all this...UHHH yeah I said. SO she beagn to tell me that its 37 per can!! Well I freakin know the price but that is not what we pay..SO I thought.
SO I am frantically calling Miles who is not picking up his phone I am sweating and my heart is racing.. I shell out 70 bucks and get 2 cans for now and leave.

Pharmacy calls me that night and tells me that the ketocal needs to go thru Express Scrips which is part of Anthem...asks if I have a card or ID for it..
UM...before I bust a vein in my head I tell her CALMLY that I have never heard of this Express Scripts (which I later find out does exist but we dont have it. we have shitty CVS caremark)
SO on to phone tag with Neurology. They FINALLY call me back and tell me to call Anthem...IS ALL THIS MY JOB TO DO??? Its like "We tried once and they denied so now its up to you if you want the possibly life changing diet for your daughter" Anthem tells me that I need a letter of "medical necessity" which we have done 60 times and I need a claim form so maybe I can reimbursed for the ketocal I have already purchased out of pocket, AND that I need to ask the doctor what the CODE is that they billed with and maybe its the wrong one...
Well this was Tueday and the two cans ran out quick and I heard ZERO back from Neuro and from Anthem and from anyone... Went to Target yesterday (thurs) and took out that shiney silver mastercard and charged over 500 dollars for ketocal because I will go to hell and back to get it for her. And I wait for this claim form with a "maybe its covered" hope..and called Nuero again and the nurse dealing with Madie was OFF...she may come in today (fri) for a couple hours but if you dont hear from her then (today) you will certainly hear from her Mon.
SO in the meantime it really left me not much of of choice but to pay out of pocket.
OH and dont forget the suggestion of Anthem to try a medical supply place "in network" to have keto delivered.... Im not looking for a place to have it delivered im looking for COVERAGE...someone to PAY for ketocal...we have sent all the crap and reasons why madie needs the stuff...sigh.
I felt like I was repeating myself over and over and when she told me to go thru Caremark again I was done. I told her thank you and hung up.
THEN yesterday I get a call from School that madie had a seizure and I had to come get her. Ambulance was called. I just lost it. Tears came and couldn't stop. I wanted to go into her school and just whisk her up and get her home in her jammys and comfy. I had to stay and wait for ambulance and sign off on it refusing it. Then I had to listen to the nurse tell me how the seizure looked and how she was making breathy noises and her eyes were rolling etc etc....
Please do tell... Ive Never seen one before...
When I got her home she actually ate a bottle and then took a two hour nap. I went into her room once in awhile to see if she was just quietly awake and nope. OUT. Poor Angel.
The Evening was good though she was happy and I gave her a nice tub tub and changed her jammys and we just hung out..watched a little Idol and The Office and went to bed..sigh.
Hubster comes home today.
My Wonderful Cousin in Law comes to town with madies two Cousins Amelia and her brother Jack I can hardly wait to have some mama time with my Annie Bannany. The kiddo is ALLL yours Miles! LOL
Thanks for Listening Folks.

Sorry bout that one. :)

2 comments:

Karen said...

Awww girl so sorry for such a bad week! I tell yeah its such a good feeling when you know things are paid for and the price almost seems to good to be true and then you get that phone call or that bill stating that they were wrong! Then good feeling gone and the BP starts to rise! Its a horrible system, I fought with the insurance for 2 years about Cami's bed and finally talked the company down to the price the insurance would actually have to pay! So maybe you can try that! I didnt even know Target had a pharmacy! Maybe you could ask your Dr if he knows of any families that have any left over. When Cami was on Vigabtrin we had a whole bottle shipped to us that we ended up not using because it just wasnt working for her so we donated it to the Dr since he asked because he said he had a family who needed it!
I so hate this for you guys! Brakes my heart! Hang in there maybe something will come along your way! BIG ol HUGS!!!!

kinsley's mom said...

Hello my name is Gwen I have a sweet little one who also is fighting this monster. I notice that you guy are tying the keto diet. My daughter is coming off of it because it didnt work to well for her. I have some of the keto-cal left 3:1 If this is the one that you are on I will be more than willing to get with you to get it to you. Please feel free to contact me @
gwenhood4@comcast.net May GOD bless and keep you!!!!!