I am using a lot of self control and not stalking Brayden's neurologist...I have her email and I know that she has a blackberry (or something like it) by her side. The neurologist told me she would call as soon as she would know something. Tomorrow is Monday and I will start the stalking then.
For now, trying to enjoy the weekend.
I found a much better article about the disorder, it uses words most of us can actually understand. Check it out, Pyruvate dehydrogenase complex deficiency (PDHA).
I am not one to usually be concerned much about what the doctors say, more the manner in which they say it. This is one of those times.
This past week when Brayden's neurologist called at 1:30 p.m., I told her that I just missed her at Children's we were in the area for Brayden's GI doctor. She asked me if I could bring Brayden back down that day for blood work. She knows that we live an hour from the office, it was 1:30 in the afternoon...I was getting concerned. Then she gave me the direct phone number for the lab technician to make sure we could be in first thing the following morning for the blood work. A direct phone number!? For those of you who have dealt with any Children's knows that the phone system is a very tangled web of options, voicemails and hardly ever talking to an actual person and if you do they are no where near the doctor. They never give you a direct phone number. Again, getting concerned.
Then she went on to explain that she showed Brayden's MRI to the neurogeneticist shortly after she reviewed it. The neurogeneticist compared Brayden's MRI to a child with this disorder and they were almost not able to tell a difference. They called Brayden's MRI, a "classic case" of this disorder, as she described in the email she sent me...oh, with other doctors cc'ed.
See all those things little adding up to more concern!?
Despite my rambling on, I am actually much more calm today about it all. But still calling/emailing/messaging the doctor tomorrow morning.