Saturday, June 20, 2015

June 20th ... another day in picu

Thankfully we were not moved to a double room on a floor unit, and now there are some empty rooms and 2 other kids who are more stable than it looks like we're safe for now and can keep the quiet big room w md's to access 24 hours....this makes mom happy.

Shea's plan: ENT will take him to the "balance lab" and perform a few more tests to absolutely rule out peripheral vertigo, they don't think he has Periph vertigo, but want to do some extra testing to be sure. Neurosurg and ortho are doing some type of radiology testing to look for csf leak.... however the first is an outpt clinic and not open until monday and the second is a test that is done by someone who works monday through friday, and is only called in if it's considered medically urgent... so we will finish out saturday and sunday in a holding pattern, continue to work on pain control, and hopefully on monday start in on some of these tests to get further answers. If the csf test is not the culprit i have also told them i would like them like them to consider comparing the compression of his chiari 2 in supine, vs sitting ( if there is a way to do this?) after i asked for this, a friend who ran shea's case past a neurosurgeon with a great reputation in the US also said he would first test for csf and then chiari hopefully we're on the right track... OR we could just pray that it would miraculously go away. Yeah - that, that would be good.

LEG UPDATE: The right leg has been the slacker. Today it finally started to show some change... we have gone from a quad flicker ( barely ) to a more visable small quad contraction and about 1/2 of the time we check him he is getting a very small knee jnt motion. (checks are every 4 hours )

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