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Battle & Soup du jour

From Mark:

Kaiser denied or request for “expedited review” in which we asked Kaiser to pay for us to go see one of the top SMA experts in the world at Stanford. Kaiser thinks it has all the expertise it needs in-house, despite the fact that the leading SMA experts in the world, who see SMA kids all the time, recommend one thing while Kaiser, who sees maybe a handful of SMA kids in a decade, recommends something else.

Today, I appealed the denial and argued our case before the Kaiser expedited review panel. I presented the details of our case, but my argument essentially boiled down to the notion that we need to see an outside expert at Kaiser’s expense because Kaiser lacks SMA expertise in-house. My hopes of successful appeal are low because if Kaiser grants the appeal, then in doing so, Kaiser is tacitly admitting its physicians lack sufficient expertise in handling SMA cases. I can see where Kaiser might find making such an admission potentially problematic.

I gave it a good shot. We’ll get the decision in a few days.

I also arranged a phone consult with gastro for tomorrow to review the post-op PPN feed issue I discussed in previous posts. I tried to get Dr. Swoboda’s office to join in the call to give me some ammunition to fire at our Kaiser gastro in our quest to get the PPN feed. Unfortunately, Abby at Dr. Swoboda’s office isn’t available, so I’m on my own to find out why our gastro disagrees with one of the top SMA doctors in the world. If our gastro still disagrees with PPN, I will be taking diligent notes and hopefully running our gastro’s reasoning through Dr. Swoboda’s or Dr. Schroth’s office later.

In happier news, we really enjoyed having a wonderful dinner at Stacey Ball’s home. She made a wonderful soup. It was more of a stew than a soup, but I liked the title of this post.

Despite being a new mom, Stacey has volunteered her time and energy to put the entire GETty Crafty Craft Fair on pretty much all by herself. We cannot thank you enough, Stacey, and everyone who has contributed in any way to our Little Owl’s cause!


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  • Gail says:

    Mark, a little late to suggest for today……record the major conversations….let them know, state it’s difficult to remember everything to pass on to Kate, being non-medical. Too hard to jot notes and concentrate.
    If done like that (i.e. not, because I’m taking the recording to a laywer) they SHOULD be okay with that. They may, because of your disagreements so far, want you to state that it’s “without predjudice” to prevent the recordings being used by a lawyer.
    Remember, I’m in the medical world!
    Best of luck.

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