Still waiting...

We have yet another medical consult tomorrow morning. That makes one every Thursday for the past month and they all involve at least half the day (there goes my "non-teaching day" for research time). Argh. But, I am still glad to have this appointment. I have been waiting anxiously for it.

Tomorrow, we meet with Dr. C, the pediatric hematologist who treated John at his birth 3 years ago. This is the partner of the doctor who told me that "without a doubt, John has NAIT, even though we can't confirm that with the lab tests." Since all the maternal-fetal medicine docs now are claiming that John didn't have NAIT (or that it is at best a good theory), I would like to discuss the case again with Dr. C.

And, it will be nice to talk directly to Dr. C this time. One thing that has been very frustrating through all of this is that each person we talk to only seems to have a fraction of the knowledge about our case, and only a fraction of the knowledge about NAIT in general. So, each is giving us an action plan based on incomplete data input. This frustrates the researcher in me. Get your data collected, sorted, and straight first. Then draw your conclusions.

My dad suggested that we go to a place like Mayo Clinic, because he has heard that they practice a "team-approach," getting all the various practictioners together in one room with the patient to discuss the case. That sounds very much like what I want (need?) right now. Unfortunately, Mayo doesn't have anyone on staff who specializes in NAIT. And, in any case, my doctors here are not sending me to another clinic for an on-site, complete consult. They just want to do the quick phone conversation route. Without me involved, apparently.

So, I feel that it is up to us to make our own "conference room." We will gather all the info we can from Dr. C. tomorrow. Then, we need to evaluate that and see if we can make a case for enough new or conflicting information to initiate our own call/email to Dr. Berkowitz in NYC. And then, I guess I am at the end of the line. At that point, I will exhausted all avenues and I will have to learn to accept the recommendations that I can get from the doctors that I have. As always, back where I started. This is all up to God. If I can just get myself out of the way.