Tuesday, July 28, 2009

Meeting With the Neurologist

We finally met with the neurologist.  After all is said and done, we’re not really sure we ever want to know if there is another EEG test.  It creates too much anxiety and from what we can tell is not exactly an exact measurement of what we need.  I’m sure much more educated people on the matter would disagree with me, but we have made peace with the unknown at this point.

Her reading came back improved.  We were able to get a printout of both last week’s EEG and this week’s, so we have more information to go on.  Last week she had something called burst suppression.  This is exactly what is sounds like.  She has moments of bursts (think of the readings during an earthquake) and moments of suppressed brain activity, where the waves are lower than normal.  Her measurements were 10-15 seconds of suppression (where there wasn’t much happening) and 1-6 seconds of bursts (where a lot was happening). 

This week the neurologist said was not burst suppression.  She had still 1-3 seconds of bursts and this time 3-5 seconds of “relative” suppression.  This is improvement in two ways.  First of all, the intervals of suppression are lower.  Secondly, the suppression is relative, so we think that means the waves were stronger. 

The neurologist still said he’s optimistic (he was a different doctor this time) which we are content with leaving it at that for the time being.  The biggest indicators are going to be what she is telling us and so far she is telling us that she is tough and reactive.  Other than that, ignorance is bliss.  

Diaper Duty

video

Morning Update (7-28)

Karsie is 11 days old!  We went in today to check on her and we noticed a new friend with her:  a new ventilator!  She has been taken off the higher ventilator and moved to a more conventional ventilator. Hopefully she handles this well, and it looks like she is handling it.  This is a great first step toward getting to hold her, feed her, and eventually (not for many months) take her home.  

We were also able to start doing day to day tasks that moms and dads get to do on their newborns.  Kevin was able to take her temperature, which we think is because the babies hate it and they want to give the hater task to the parents.  Also, Michelle was able to change her diaper. Karsie's catheter was taken out, so she now is able to mess her pants.  We have video of our first change, but it's a little long and blogspot might not handle it.  We'll try.

As far as the news that everyone is waiting for, we have some of our own:  Neurologists (and many doctors for that matter) are frustrating.  Our social worker called to see if he was coming down to talk with us and he said he would "some time this afternoon."  That's about the same line as we were fed about when the results were going to come in before we had to practically hold up the hospital to get some information.  We said that we would prefer not to camp out at the hospital all day and she said that we would get a call in that case.  So, at "some point" today we should have some news.  However, we were told again by a different person that it was not burst suppression anymore, so we are hopeful that it is starting to correct itself even though it is still abnormal.  We are also getting encouraging news from people that have had EEGs or experience with them that they know someone that had an abnormal EEG for an extended period of time after birth and they ended up just fine.  While that can be a lot of anxious waiting, we're hoping that is our case if we don't get a "normal" reading sooner.  However, we should have some news from the actual doctor "some time" today.