EEG Results

Hayden was a wild man during his EEG. He even ripped his leads off once-not that he didn't try many, many times.  It was quite a challenge to keep his hand off of them.  I can't even imagine how hard it would be if he used both of his hands. This was the first time he was awake for the entire EEG.  He usually naps for 3/4 of it.  Since I had to spend most of my time trying to keep his hands off of the leads, I didn't get to peek at his EEG like I usually do, so I wansn't sure what to expect.  EEG day is a day I am filled with so much anxiety.  I am so afraid of the results.  An increase in Hayden's seizures could have a devestating impact on Hayden's life.  Not to mention the rest of the family.  We never want to spend another winter like last winter when all we could do was watch seizure after seizure and do nothing for him but to keep him safe and record each seizure on a spreadsheet that I created while trying to comfort him.  Not that it helped, but we had to feel that we were doing something.  I pray every day that God will spare Hayden from more seizures. 

It turns out Hayden's EEG showed seizure spikes in the center of his brain.  Not in the back left part of his brain as in the previous EEG.  Since Hayden was awake and active, it was really too hard to compare the two EEGs to conclude if this EEG was similiar or worse than the last.  Guess we'll have to wait until the next one. 

While we were at the hospital for the EEG, we were also supposed to get blood drawn to make sure Hayden's Phenobarbital (seizure med) is still at a theraputic level.  Only one phlebotomist in the hospital has ever been successful at drawing Hayden's blood.  Of course, she wansn't there.  PICU didn't answer the phone to see if a nurse there could help out.  So, we had to leave without it.  Hayden's neurologist had the same idea I did.  I am going to ask the hospital in Detroit if they will draw a Phenobarb level after they put Hayden under for eye surgery December 14th.  Wish us luck.  I know that Hayden's veins have been well used, and when the poor boy averages surgery every 2 months there isn't much time to heal, but why do we have to rely on one person for labs?  What do we do if she moves out of town?    More training with little veins is clearly in need.  Sorry for the rant.  This subject makes me very upset.  It is so frustrating that only 2 people outside of the NICU have ever been able to draw blood or get an IV in Hayden.  The other was a transport nurse in Iowa City.  It makes for an unhappy Hayden and a very stressed out mama that can't do anything but advocate the best I can.  It is only getting worse as he gets older and can better express his feeling and fight with the people trying to hold him down.  In the heat of the moment, I find myself fighting back the tears more and more often.  Tears do Hayden no good, so I keep them for when I'm alone.