Okay. So last week, I was away from my family speaking at a family camp that my family usually attends with me. But I ran solo this time and Liza stayed at home, flat and mostly in bed. The kids had some friends over and tried to recreate the camp vibe at our address. In the middle of last week, Liza got a call from Cedars Sinai Hospital in Beverly Hills - our recent and frequent stomping ground.
It was Dr. Schievink's PA Rachel. Liza said she was very nice and patient. After hearing of Liza's lack of progress, we were welcomed into the next stage of Dr. S's plan: the digital subtraction myelogram test (which involves a lumbar puncture and quite a lot of time and maneuvering, all under general anesthesia as we understand it) and then a menu of options to fix what they see, including injections of glue, microvascular repairs of potential fistulas (this includes scalpel and sutures) and another blood patch.
Dr. Schievink, who will be involved in this stage, will choose from the menu of options (perhaps other options?) based on what he sees from the DSM test (perhaps multiple tests?).
Can you tell there are a lot of gaps in our understanding at this point? If you recall, on our first trip here in May, we were operating under the impression that these steps would be taken then. It was quite a shock when we were told something different. Two trips and two large blood patches later, we are now facing this stage - I'm calling it stage 2 - which we have always considered to be the most promising.
Right now, here's what we know for sure. Liza is not good. In fact, she may be worse than ever. I hate even writing that, but it is fact. The ketamine infusion on Monday this week barely lasted six hours before the debilitating headache returned. It was a hard one too. She is weak, nauseous and in constant pain. We also know that Dr S's plan forward seems to be the best option. Several other opinions agree.
But here's the rough part. Rachel, on the phone with Liza last week, told her that they couldn't get her in for all of this until late September. September...!? Fifty days or so is far too long to suffer as she is. She broke down on the phone with me.
So, I got on the phone to the woman in charge of all scheduling for Dr. Schievink. She's been very kind and helpful to us in the past. She confirmed the current September 23 start date but then began to work on getting us in earlier than that - much earlier. So this is our big prayer request as of now. Please pray we can return and enter the next stage of Liza's treatment - the stage we have always considered to be the most promising - in mid-August (Dr. Schievink is currently on vacation). I've had one more phone call and several emails since my first attempt late last week.
The rest of the complex family, church and travel details of our third trip to California remain on hold until we receive word of a near date.
For now, please join us in prayer. Thank you so very much.