Tuesday, February 10, 2009

Not giving up

Nearing the end of my rope on the VMR ordeal, I decided concoct a Plan B. Our pediatrician. I couldn't just let this go without a fight. I called them up yesterday morning with as much assertiveness as I could muster up.

I put it all out there for a nurse I'd never spoken to before. I left nothing out, including my opinion on our current specialist.

At about 1:30 pm, I got word that he couldn't do it, along with an explanation of why he couldn't. It screamed misunderstanding...I could tell the doctor must have misunderstood the situation (which is bound to happen with relayed messages). I came so close to admitting defeat and hanging up. Then I thought of us having to settle with our current treatment plan and prognosis. So, instead of giving it up, I pleaded with the nurse to talk to him again...this time I know she heard my voice cracking...my calm assertiveness turn to desperation. I told her this was probably our last alternative and that I just needed him to agree that this test would be beneficial for Austin. I went through all the symptoms he's having that suggests that he has a focus. I told her I could get all this information to him if he would just help us. She agreed to try again and said she'd call back and let me know.

By 4:30 I'd almost given up. Then I got the call that brought me to tears...happy tears, that is! She said that he would need to speak to someone in the insurance department to find out what format this medical necessity letter needed to be in, and that he would work on it the next couple days.

He's agreed to do it. My only fear is that the insurance may not accept it since he's not Austin's epilepsy doctor. I don't know, we'll see. I'm just glad we still have a little to hope for...at least it's something.

In other Austin news...his spasms are crazy up and down. Late last week and into the weekend he was doing so great. His moods and seizures go hand in hand. Great seizure day...great moods to go along with it usually. We even let him take a walk around the living room without his helmet. He was doing that well. But, just as I start getting used to the idea of less seizures, they go back up. It's so confusing. I cannot figure out why this keeps happening. I just don't see how he can do so well for several days and then we lose it just like that. It was so great on Friday night that I even forgot about it for a while. Then it was like, I remember this! This is what it feels like to have a normal routine that doesn't involve seizures! We played and laughed and just did our thing that night. I didn't have that sadness hanging over me. I just enjoyed every second of his near seizure free evening. I remember calling Mom up on Saturday morning...I said, I wish you could see this boy right now! He was so full of smiles and expressions...and not full of seizures. I had so much energy that day. I was optimistic and so excited that I felt total rejuvenation. We took advantage of the warmer temps outside and played in the yard...I cleaned the house and did lots of laundry...it's amazing how different I feel when Austin's doing well. It's like I'm a different person. When he's yucky, I'm yucky...when he's great, I'm great. Anyway, that evening when he woke from his nap, our "norm" was back, unfortunately.

I was more determined than ever to get this VMR so we could make the best of our Detroit visit. I don't know how much we could really get accomplished there without it. It's obviously necessary or Dr. C wouldn't want it done.

Please keep little Austin in your prayers. We need all the help we can get. This process to get to Detroit is so intimidating. I'm just praying that once we finally do get there, that it will be worth the fight. I'm praying that we will have new options and more answers. I have faith that even if Austin is not surgical, that Chugani will shed some light on his situation.

By the way, thanks to Jen and Danielle for the encouragement! I'm working on a lovely letter to our not-so-wonderful specialist. I'm sick of not being heard!


JSmith5780 said...

I've got 2 secs til I have to walk out the door but HAD to read the update after you posted on Trevy's site.

See what happens when mommies become activists. We get things done! I am so glad youa re seeing progress with the ped being willing to help!!


baby trevor's mommy said...

I'm SO proud I just wanna pinch you! You're doing the right thing! It takes SO much energy to live with seizures...that sometimes it feels like we don't have that extra to fight for them too. But you found it! And I'm so proud of you! I hope that your insurance approves the VMR...it's not an extravagant request. Most seizure kiddos have them bi-annually annyway.

Hang in there sweetie...