You should see me today, I look like I have been run over. My head is hurting, and my eyes are blood shot from lack of sleep I will explain why in a bit.
Yesterday I picked up Jude's Depakote. The doctor had given Mike a card to waive our $60 co-pay. It is a program Depakote is sponsoring so people will not try to get generic. We were told from the start you NEVER get generic in seizure medications. Anyway, so first off the lovely lady at the pharmacy told Mike it would be an hour and a half wait to get the meds, due to being busy and because they need to process the card. So Mike dropped everything off to her, and I went by to pick it up after work. We normally use a compound pharmacy by my office, but since Mike was coming from Plano he just dropped everything off to a local well known pharmacy. When I went by the lady, couldn't find the meds, then she couldn't find the card, then the card wouldn't work. ARGH! She finally just said because the prescription was labeled "Depakote sprinkles" vs "Depakote" they wouldn't waive the co-pay. REALLY???? I explained that the sprinkles are just the form of the capsules so a BABY COULD TAKE IT! Anyway, I was angry and took the medication after paying yet another $60. Hence the reason why I use the compound pharmacy!!!
So I get home, and I start reading the warning label on the front of the medication. In bold it says "RARELY, serious and fatal liver complications arise, but this is more seen in children under the age of two that are on other seizure medications, or have brain abnormalities". ARGH ... again! I understand the is more of a metabolic issue I am sure, but we have no idea of any other problems Jude has. I know the doctor is doing what he thinks is best, but this is Jude we are talking about. I just hate medication! So we gave it to him, but then I mentioned to Mike that maybe we shouldn't include the topamax too. We aren't doctors though, and that just upset Mike, which I can understand because it places everything on his shoulders if something goes wrong. It's just so nerve racking, but we followed the doctors orders! Anyway, it is going to take awhile for the medication to get into Jude's system so we did not expect a seizure free night. I am glad we didn't because Jude had a seizure a 1, 3, and 5! Mike got up with him since I was the up the night before, but I was still awake each time. I am EXHAUSTED, and just asked my boss if I could leave early. I never do that so I doubt it will be a problem.
So I am working away, and then I am heading home. I think a few Zzzzz's will do some good. I did hear back from the MDCP dept regarding Jude's approval. We are setting up the nursing home stay, and then we will be approved. Jocalyn girl, I tried but even her supervisor wouldn't approve us not having to wait thirty days... grrrr.
I hope everyone has a great Tuesday. We are praying that Jude shows improvement today. Thanks for the prayers, and reading about our family!!! Oh and Emily has softball tomorrow and Thursday so we are looking forward to getting out in the sunshine!!!
PS ~ I heard from a mother who found my blog who's son has bilateral schizencephaly just like Jude!! She was so nice, and even showed me pictures of her son. He is so cute, and has dark hair like Jude. He is older, and her little boy gave me a lot of hope! He walks, talks, etc. She said he is delayed but has done a lot more than the doctor's ever thought he would.