The Amazing Owen
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Seizure Study - Days 5, 6 & 7
We're still here!

Those of you on Facebook know that we had a rough evening on the night of day 5.   Owen had blown yet another IV and they were placing his 4th one.  Despite me asking repeatedly for some kind of sedation to take the edge off the IV tech proceeded saying that it was not possible to sedate for an IV.  It was his 5th traumatic procedure in 5 days and it was getting to be too much to have 4 people holding him down while he screamed.  He also planned to put the IV in the top of his hand, which would require his hand to be immobilized.  Owen is deaf and uses his hands to sign - even with his cochlear implant he still signs more than he speaks.  I also pointed out that he would no longer be able to pull to stand up and would have difficulty feeding himself.  But the tech said that it was the only viable site he could find. 

By this time he has been poking and prodding to find a site for like 10 minutes and Owen is just frantic.  What I should have done was to kick the tech out at this point, by body tackle if necessary, but for some reason that I will never fathom I did not.  He placed the IV in the top of his right hand.  He then placed his hand flat on a board to completely immobilize it - with me standing there telling him how this isn't going to work the whole time.  He had the hand secured to the board with nothing covering the actual line - it was just taped down.  When he went to take the tape off the old line - which we had left in until we had a viable new one - Owen brought his arm up to bite his wrist, which is a nifty new habit that he has picked up, and nearly bit through the line. And then Owen starts staring off into space and then goes to sleep while they are taking off tape.  I'm just a touch concerned about that, but back to the tech - So I explain that he will have to find something to put over the top of the line.  At this point the tech just walks out of the room.  I wait a couple of minutes to see if he has gone to find something.  When he doesn't return I walk out into the hallway and find him writing in Owen's chart.  I ask him what his plan is since we still have an unprotected IV and he says, "Unprotected, in what way Ma'am?".  I said, "Well, you just saw him try to bite through the line, that's probably not a good thing."  To which he replied, "That's the nurse's problem" and walked off the floor.

So Owen is now passed out cold, the line is unprotected and the tech is gone.  The nurse jumps into high gear and finds anything and everything that might cover and protect an IV.  We spend a half an hour trying different things until we manage to get something on him that looks like it might actually last through the night.  And now Momma Bear is downright pissed off.  They worked on my son for so long that he actually passed out.  They placed a line in such a way that he wouldn't even be able to talk to me.  The charge nurse was called in and told that no one was to touch Owen again except to flush the line until neurology came by in the morning.  No vital checks, no pokes, no prods, nothing.   It took my Mom, my husband and my friend Jill to talk me out of my tree so that I didn't head down and find that tech and do something painful to him.  I also had to calm down enough to not just pack Owen up into the car and head home that night. 

The next morning I told neurology that they had to either sedate him and move the IV to a more appropriate place - he had a leg that still hadn't been used - or they could provide medical transport to another facility where they might actually care about what they were doing to the kids.  You see it is somewhat dangerous to move Owen right now as they have taken away all his meds.  We won't know until he has another seizure whether or not having gone off the meds will cause it to be a much more severe seizure.  We could get halfway home and find ourselves in real trouble on the side of the road.  The doc was somewhat shocked at what happened.  He ordered the IV to be removed and to rely on Diastat in the event of the seizure, which seems reasonable considering Owen has always responded well to Diastat.  This way the only thing Owen has attached to him is a pulse-ox and the EEG, which is a manageable set of things that don't really impede his normal movement.  He also wrote orders that no more procedures are to be done that involve more than minimal pain or restraint without sedation.  We're not talking about knocking him out completely - just giving him goofy juice (Versed) or chloryl hydrate to take the edge off. 

So we decided that we need the data too badly to leave now and wait a few months to get on someone else's schedule.  And now that Owen is finally comfortable and being treated as a healthy person waiting for a seizure, rather than a critically ill boy needing round the clock care, it has become a more bearable situation. 

This evening we had something that we wondered if it might not be a small seizure.  He was very tired - Daddy and Sister came down today for a visit and Daddy really wore him out with playing.  He was standing up in the crib and his eyes started to roll back in his head and he started losing his balance.  I jumped up and helped him to sit down where he promptly closed his eyes and went to sleep while sitting up.  Now long time readers of this blog will know that Owen's ability to fall asleep anywhere is a bit of a running joke.  I have pictures of him asleep on top of a therapy ball while his therapist was bouncing him, falling asleep in his stander, etc.  And yet it still doesn't seem quite normal to fall that much asleep while upright.  So I logged it as a possible event and we'll see if there was anything tomorrow when they read the EEG.  Either he had a small seizure, or he just isn't bright enough to sit down when he's that tired.

We also met with his normal neurologist today for the first time as he is now on floor rotation.  This was an enlightening experience.  Every time I have asked the neurologists whether or not they have seen anything they just say no, not a thing.  Well today Dr. Gallentine came in and said well it isn't a clean reading either.  I was a bit shocked and explained that Dr. Smith had told us that he hadn't seen anything.  You see Dr. Gallentine specializes in epilepsy and seizures but I am now finding out that Dr. Smith is more of a general neurologist.  So Dr. Gallentine took the time to really explain exactly what he is seeing.  He says that Owen's EEG does show what he called spikes and sharps which are two different abnormal shapes that are showing up now and then throughout the day in an area of the right side of Owen's brain.  These aren't seizures and they haven't seen anything that looks like a seizure since he got here, but these abnormal bursts could potentionally lead to a seizure.  He also said that they have seen more of these shapes since he went off the meds completely.  This seems like information that might have been useful and does mean that perhaps the meds were helping somewhat.

So we still haven't had one of Owen's typical seizures and are therefore still waiting to see one.  It has now been seven days since his last seizure and that means the clock is now really starting on his next one because they have never been closer than seven days apart, but they are often between seven and nine days apart.

And now for the pictures.  Just because Owen is out of school doesn't mean that he doesn't have any work to do.  They have encouraged us to keep him doing as many normal activities as possible in a crib and chair to keep his brain as active as possible.  Ms. Pat, Owen's special ed teacher, was kind enough to gather up some stuff for him to bring on the trip.  Here he is putting some sticky stars on a piece of paper on his slant board:

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And yes, Ms. Lori - those stars have glitter on them!  We also tried out the cool easel Ms. Pat got for him:

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Owen's sister Sammy and his Daddy came down for a visit today and it was a nice break.  Grandpa came down on Friday and these visits have really helped to keep us from getting too stir crazy.  In honor of Halloween Sammy had put on a dress as part of a fairy costume, but she forgot her hat at home.  I brought a skeleton costume for Owen figuring that we would still be here for Halloween.  Sammy climbed up into Owen's crib to take a picture:

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Absolutely priceless!

And now we just go back to waiting!
 
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