This is David writing for Eva again.
Much remains the same as the last time I posted. Eva is still in pain and nauseated. We have some new symptoms (diarrhea). We have the same feeding tube Eva has had since early August. We have blown past two appointments for getting it swapped out without getting the necessary approval from the insurance company.
Just a reminder: Eva has been in a great deal of pain since she had this tube put in on August 1, and has been unable to use it for feeding because of the pain. Instead she is now on TPN (IV nutrition). We believe the pain is being caused by this tube or how it was placed given that the pain and the placement happened at the same time. None of the imaging has shown any reason this should be true, but it also hasn’t ruled it out.
About 6 weeks ago the GI authorized a tube swap for Eva (though this was not well communicated). It was originally scheduled for Second Day Rosh Hashanah (October 4). But first, as with everything in today’s medical system, we needed clearance from the insurer.
Stanford is out of network, but there is a magic form that lets them perform the procedure as though they were in network. But despite a heroic push by our complex care coordinator, this form could not be completed by October 4th. The night of October 3, the procedure was pushed, rescheduled for October 24 (“hey! That’s tomorrow,” I hear you thinking). For the last three weeks our complex care coordinator has been chasing around with Stanford and Blue Shield, trying to establish where the form was and whether it had been approved. Stanford said it had been submitted. Blue Shield said they’d never seen it. Stanford couldn’t produce a copy for our complex care coordinator to show Blue Shield and push through the bureaucracy. This has been the subject of daily pushing by us and our complex care coordinator for at least 10 days.
Today, the secretary of the GI practice at Stanford sent a note through the patient portal saying, essentially, “form? What form? We never filled out a form.” Procedure was canceled again.
Eva remains in debilitating pain. The form seems not to exist yet. We have to start over from the beginning. And now Blue Shield says it is taking them a week to enter forms into their system for review, so plan extra time for that.
To say we are frustrated (and that Eva is so far beyond frustrated that I don’t have words to express it), would be rather like a theologian describing God as “good” (that’s a pretty funny line for those who have studied medieval theology–if not, well, have you considered going to seminary so you get the reference? It doesn’t take more than five or six years…). Yes, we are exploring other options (can this be done truly in-network? To what degree is this a commodity procedure and to what degree does specialization matter?). Yes, the complex care coordinator is part of the frustrated we. I believe Kafka was mentioned today.
And so, we are restarting this process again tomorrow. Girding ourselves once more to battle bureaucracies that specialize in making it difficult to speak to a human (again, so grateful that the complex care coordinator does much of that navigation for us). Eva remains in pain and nauseated. And we continue to float on in winds and tides of large institutions, subject to their whims and arbitrary decisions.