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:



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


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:


Absolutely priceless!

And now we just go back to waiting!
Seizure Study - Days 3 & 4
So, we're still here and no seizure recorded, and we're still having no plan to leave anytime soon.  After many discussions and much growling we were able to get some things settled yesterday.  The annoying cardiac harness was removed - Owen does not have cardiac problems and no amount of tape/adhesive/gooey stuff could keep the leads for it on.  The IV was re-wrapped so that it could be checked without removing bandages everytime.  I think we have things down to a manageable situation now - it was a much more peaceful night.

So far the most interesting thing we have learned is that they have seen absolutely no seizure activity, even when they removed nearly all of his meds.  As of 1:30pm today all of his meds are gone now and we'll see tomorrow morning if that produces anything.  I'm not actually all that surprised that they haven't seen anything yet as we have had many EEGs done in the past (4 I think) and none of them has ever shown anything except one that was taken while he was post-dictal (knocked out cold by a seizure) and that one just showed some slowing of brain activity.   This is why we've had to go to long term monitoring, we aren't going to learn a thing until we can catch him in the act.

They say that they normally want to catch 5 or 6 events in a study, but I can't see how we can do that when it's usually at least 7 days in between our events. 

This afternoon they had a Halloween Parade for the kids here.  They came around and gave all of the kids costumes and then lined them up for a parade around the two peds floors.  Owen couldn't leave the room because he is tethered to the monitors, but they have a long cord and we were able to wheel him out into the hallway so that he could watch the other kids.  It was the cutest thing ever!  And since Owen couldn't go and visit all of the stations that they had set up for trick-or-treating, one of the child life specialists brought back a bag for him. 

I really wished I could have taken pictures of some of the other adorable kids, but then you'd have to get permission to publish the pictures.  But I was able to get a few of Owen in the Buzz Lightyear costume that they brought for him:





As you can see - he's in a really good mood.  In fact that really describes the situation since they have taken away all or most of his meds - he's so much happier!  It had been almost impossible to get a picture of Owen smiling in the last half a year, and today I had so many to choose from that I can't show them all (and get this update done before dinner!).  It has been a breath of fresh air to have such a Happy Owen.  He was waving to the other kids as they went by in their costumes and seemed to enjoy the break from his crib.  Now we go back to the waiting game...

Oh, and yes Sammy - we'll save some of the goodies we got for you!
EEG Study - The First Two Days

So on Monday we headed south to Duke for a prolonged EEG study since we've never been able to catch a seizure on EEG. I've explained the reasons why we needed to do this in previous posts, so I won't bore you with them again.

It took two months to get the appointment.  My parents drove 12 hours to come down and help us.  The techs in the Epilepsy Lab were warned repeatedly that Owen cannot be without liquids for very long, so if they are going NPO so that they could place the electrodes under sedation they had better be sure to be on time.  He dehydrates very quickly and then his system gets stressed and then we are at risk of seizure or having trouble waking up from the sedation needed to get the electrodes on.  And, of course, we waited and waited and waited while they couldn't get a nurse to sedate him and could't get the process started.  We didn't wait in the epilepsy lab where there were beds or anything.  We waited out in the main admissions area for Duke Hospitals.  So, when things started going downhill fast - as we told them it would - we were in the lobby.  Instead of being hooked to leads recording the event, we had to find a clear spot on the floor for Grandma to lay down her jacket so that I could administer the Diastat when he had the seizure. 

I'm fairly certain that everyone reading this blog probably heard me yelling nasty things at the lab people no matter which state or country you live in.  You see, Owen has never had a seizure closer than one week apart, so it is quite likely that their inability to plan ahead far enough to have a nurse available for an appointment planned two months in advance means that we all came here for nothing, or that we will be here for a very long time before he has a seizure.  Momma Bear was slightly miffed.  Miffed enough to call patient relations and file a complaint while we were sitting in the ER.

Rather amusingly if you have a medical emergency inside the hospital when you haven't been admitted, you still have to call 911 (or the nice lady at the admissions desk does) and then they have to admit you to the ER, even if you would not have even called EMS if you had been at home.  I feel very bad for the others in the waiting room as I had to rip off his diaper right there and then to administer the diastat - which is given "up the bung".  We don't have much time to spare as if we let his seizures get up a head of steam they get much more severe.  He started to desat (as usual) and I had to break out the oxygen tank right there on the floor next to the big fountain.  By the time we finally got admitted to the floor to get the leads hooked up it was after 6:00 pm and they didn't finish all their admissions stuff until 10:00 pm. 

So now we sit and wait.  They have taken away two thirds of his meds in an attempt to induce a seizure.  It has been a bit heartbreaking in a way - during the long span between the doses he becomes so much more normal in his behavior.  He isn't biting everyone who tries to touch him.  He isn't frantic.  And then they give him his one dose and suddenly you can't even flush an IV without someone sustaining damage.  Getting a glimpse of the more evenly behaved boy that I remember has made it much harder to stuff the meds in his mouth at lunchtime.

On a more amusing note, I have some pictures of Owen.  I think the hat that they put on to keep the EEG leads on makes him look like a teletubby - maybe LaaLaa when his head swirl is done up right, though I've just taken to calling him Po for the week. 


The hat actually fits like a ski mask and since Owen is so used to wearing a hat all the time to keep his cochlear implant on, he doesn't seem to mind it.

He has also reached another one of those odd milestones.  For the first time he is able to climb up and stand in the crib at the hospital.  He likes to bang the big plastic dome that they have to keep kids from falling out.  I don't think his neighbors (they are all private rooms here, so at least there is a wall) probably enjoy it as much, but Owen sure has a good time.


As my friend Amy pointed out, it looks kinda like a space ship - I think we'll call it the USS BubbleCrib!

So now we've settled in for the long haul.  We've brought every toy he owns, and he seems content enough for now, though he does look out the window and say "Out, out" a few times a day.  We can't leave at all because we might miss a seizure and he has to be tethered to the continuous monitor.  But we're making the best of it and we'll just see how long it takes to get a seizure.  It's a very weird thing to say but, "Hey Owie, hurry up and have a seizure please!"

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