Alex and Maddy

Alex and Maddy

Tuesday, June 19, 2012

Interesting Day

Alex and I got on the road early this morning to head to Houston. We were scheduled for a test at 3:00 to look at the function of Alex's autonomic nervous system. The test is called a tilt table test. Alex was on a table with all kinds of leads hooked up. He was then strapped to the table so he couldn't move. For about 10 min. they recorded all sorts of information. Then they tilted the table to 70 degrees so he was almost standing. They continued to watch the same information. After about 30 min, they put the table back down and watch for another 5 minutes. Sounds easy enough, right? Unfortunately for someone with dysautonomia it is extremely uncomfortable to be in this position without the ability to move.  I was extremely proud of Alex (as were the dr. and nurse) as he tried to move and fought back tears, but hung tough for the entire test. His findings were significant and we will begin to treat his dysautonomia. I was interested to hear that a lot of the fidgeting that Alex does and what we consider to be hyperactive behavior is most likely his brain trying to signal his body that something is wrong and get more blood to his brain. His brain perfusion dropped almost 20 points when upright meaning his blood pools in his lower body and he doesn't have the ability to get the blood back to his brain. I am hopeful that the new medication will help!

At the end of the test, the cardiologist let me know that our hematologist wants Alex admitted tomorrow to check labs and see if their is any treatment needed before his Cath on Thursday. Unfortunately our hematologist is out of town and there is no record of this. So as of now I am unsure of if we are being admitted tomorrow or not.

We head back to the hospital tomorrow to meet with anesthesia and have a GI test done. I will update when we get back.
Ali

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