Wednesday, February 4, 2009


I had a whole post prepared this morning. I was just finishing up when I lost my internet connection (gotta love tha dial up!)..I'm sure it was saved in here somewhere, but there's no point posting it now when I already got the confirmation I needed.

I went on and on about how I was amazed at Trevy's neuro. How she put faith in him and gave his parents optimism...even during the dreariest of moments upon receiving a devastating potential diagnosis (from another doc). I was taken back by reading of her compassion for Trevy.

I remarked on how I wish we had that as well. How furious I am that we're 0-2 in the neurologist department so far. How insulted I am that our specialists don't take the time to appreciate how much I love my Austin. Clearly they do not. If they did, they would show a little more sensitivity towards us and respect how difficult this situation is for us. I'm insulted that Austin is only known to them as a name and DOB. The nurses I speak to over and over have never sincerely asked how he's doing. He's just a name on a sheet of paper to them. I've never gotten an ounce of compassion from them. Not a bit. I didn't think this long wait to see our new one in March could get any worse. But, TCH certainly proved me wrong.

After our three month space between appointments turned into nine months, it was clear to me that this guy's priorities are not in order. He simply cannot provide adequate care like this. Whether it's due to his indifference or just an inability to turn anyone away, it's not for us. And because of this I turned to Detroit for guidance and hope and optimism -something that is extremely lacking where we're going now. Dr. C's email gave me so much hope. That sinking feeling in my stomach turned to butterflies. He opened a door that I thought was locked. Even though we've never seen him and we don't know if he can even help Austin yet, he gave me renewed strength to keep going and trying...and hoping. All we had to do was get there.

If it were only that simple. Nothing is simple anymore. Not colds, or feeding, or development, or rashes, and especially not doctors and hospitals. There is always more...more complications with everything, whether it be drug interactions or side effects or the dreaded insurance procedures.

We got a big fat "NO" for the VMR (the 24-hr EEG). He refuses to cooperate. I didn't just get a "NO", but I got a whole load of condescension and sneering.

And although I had a clear cut rebuttal to fire at this witch of a nurse (I'm trying to keep this PG here!), the ammunition that I needed did not dawn on me until I hung up the usual. As I crouched in the hallway in tears, I wondered how he had the audacity to deny my child better treatment.

I know that Dr. C gets tons of out-of-state patients all the time. I'm sure his staff knows exactly how this procedure is supposed to work. Yet, the people here are saying that it's absurd. She even snickered a bit when I told her how the process was explained to me. As if one of us (me or the nurse in Detroit) has completely lost our marbles. She said, "There's no way Dr. W is going to write an order for a procedure to be done out-of-state for another doctor." And, "...there's no reason to go all the way to Detroit for an EEG when you can have one done here." No matter what I said back, it was totally ridiculous to even suggest such. I hung up with her with my confidence severely damaged. I was furious, overwhelmed, and humiliated. And as I repeated that comment in my head about going all the way to Detroit for an EEG, I got even more angry. Angry because not only will Dr. W not order one here, but he won't even SEE him!

I wished so bad that I could rewind back to that conversation and remind her of that.

I never say what I wanna say when I wanna say it!! Conversations like that always become something that I replay over and over in my head...and then cringe over and over.

I have a feeling that before all is said and done with the people of TCH, I will have gotten my satisfaction in one way or another...whether it be by finally telling them exactly what I think of them or by Austin proving every one of them wrong!


JSmith5780 said...

I'm not one to take NO lightly. I see two options, perhaps both at the same time.
1) write a scathing letter to the head of the hospital. Detail the seriousness of IS and the poor care Austin has received from the neuros.
2) contact the media... print and tv. Again complain about the hospital, specifics on IS, the rarity of it, plead your case and play on Austin's cuteness

ok one more
3) copy all this info to the insurance company, talk about the long term devastation of NOT treating IS properly. Perhaps they will realize if they "heal" him now, his care should be cheaper in the long run. Insurance companies aren't compassionate, but play up the financials of treating now or treating the long terms effects.

worth a shot

baby trevor's mommy said...

ditto everything on what Jen said. I'd personally start with the media. People love to get outraged over mistreated beautiful babies!

And meanwhile...start looking for yet another neurologist. We are SO blessed with Trevy's neuro. But she wasn't our first. We spent time with two others who were both arrogant & dismissive before we found her. There will always be people involved that you don't have a huge heart connect with...but you should at a minimum have a neurologist that you can communicate with. That will order an EEG if you ask for one. That is NOT an over the top request! I'm in the middle of switching pediatricians...for the second time in a year...because our current one just can't sync that Trevy is not one of the "herd". And I'm determined to build a team of people that have the knowledge...and compassion...and understanding to work together with me in doing everything possible for Trev. There will be some areas that you have to compromise...I'm not in love with our PT...but I've chosen to let it slide because it's not as essential as other areas. Neurologist is essential!

Hmmmm....just a final thought...have you contacted your local epilepsy foundation? They should have an advocate for you? And even get you in touch with other parents (not neccesarily IS) that might know of better neuros? I know all the epilepsy parents here talk...and for instance HATE the same neuro! And love the others...

Just a thought sweetie.

But you're doing everything right for Austin! And fighting for him is what you're supposed to do!

Anyway...Trevy is really fussin'...