Wednesday, December 3, 2008

Hospital talk -the final straw

Austin in action!

Between the ongoing arguments with our epilepsy clinic and the never-ending helmet issues, all I've done the past two days is research hospitals and specialists...I'm so consumed with the need to get Austin the best care possible that I have barely held a conversation that doesn't involve IS!

But, I've finally made up my mind...we are done with our current epilepsy clinic. I tried to imagine what this ordeal would be like if we had a team that cared about us and the outcome. Not having to worry about fighting with them or riding their tails would take so much off my shoulders. So, thanks to my mom, we now have an impressive list of new clinics and hospitals to check into. Of course, they all boast qualifications and dedication, but Chad and I know what we want and know that the paper qualifications can be deceiving. Look at our current one...#5 in the nation for pediatric'd never know it by dealing with them. It's not just because they haven't "fixed" my son by now, but they certainly don't act like a 5th ranked provider. Maybe their rankings have gone to their heads and they no longer have time for us. I think that patient dedication and compassion is seriously lacking there and their BIG doc's are stretched too thin. It doesn't do us much good to have a BIG doc if we can't see them or talk to them. The nurses guard the phone and screen and filter our questions and concerns...not to mention them giving me their condescending responses and advice.

So, yesterday morning's conversation with them was the final straw. I had reached my limit of insensitivity. I told them exactly what I thought of them and their "procedures"...I only wish I would have "went off" on someone that mattered there! I'll spare you the gory details of the call and just leave it at they gave me the confirmation I was looking for in my decision to change hospitals.

We will all be much better off with a team that cares even if we have to drive across the state to see them!

I'm just waiting for Austin to get up from his nap so we can go get our helmet ordered. I wish we could have done this sooner because we'd probably have it by now. I had no idea it would be such an ordeal...I'm excited to get it though so I can relax a little with him. He'll be soooo happy to get back out on his own and walk! There's no telling what he'll be able to do once I ease up a bit. I know he senses my nerves...I just know it. He'll be so playful and proud, but as soon as I run up to him and try to guard him he's not interested in much anymore. Now, I won't even let go of his hands...but, that's about to change, I hope!!

I'll keep you all POSTED!!


Jonathan said...

I don't get it either. The lack of care many doctors have. And for some reason it's often in the specialist fields. It's like they've seen too much...and their hearts are desensitized. You have every right to be angry...and to demand the best care for your baby! IS is huge...and scary...and serious. And you deserve to be treated so. I CAN'T believe that you're still waiting for a helmet! I disgusting as I think it is...sometimes I understand why people sue! It's like the only way to get their attention is with money! Ugh!

Anyway...good luck finding a new place for Austin. I really hope you end up somewhere amazing!


Jonathan said...

oops...I signed under my hubby's name.

...danielle - trevy's mom

Jamie said...

Oh man...Im sending big hugs your way....CRAZY!!We had to seek second opinions in New Haven with madie and her meds...when we were being told that she needed these drugs and STILL having mucho seizures! I was pushing for a new med! It can get crazy with the doctors...who really dont know HOW to get rid of IS....they just play the drug game... and dont get me started on Inusrance approvals with med increases and decreases..ugh and gah!
Sending it allll the way from CT girlie!! :) :)