The Amazing Owen
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Thanksgiving Tradition

So once again we have made it home the day before Thanksgiving - another narrow miss on a major holiday but I'm not greedy, I'll take it! 

If you are busy with Thanksgiving and just want the overview, here are the bullet points:

  • EEG showed no seizure activity (WOW!)
  • Poo backed up again - think it might be slowing down the shunt causing our sleepiness
  • Admitted to hospital for clean out, hopeful the sleepiness will go away now
  • Home yesterday afternoon, now belly pain free and waiting to see if he will stay awake during the day
  • There is a cute picture at the bottom
If you want the long winded explanation with humorous bits and detailed explanations read on:

So when last I posted we were starting our second EEG to check out the long stretches of Owen not being able to stay concious for more than a few hours.  It turned out to be the worst week ever to have an EEG because for a change Owen did very little that we were worried about.  He had had a sinus infection starting the in the middle of the previous week and we had put him on antibiotics for it and rather miraculously we had a solid 7 days with no Ativan and no unexplained 5 hour naps an hour after waking.  We thought we had the answer, maybe he had been fighting a little infection (that didn't show up on the blood tests that we had done in the first week of the sleepy issues) all this time.  I emailed his neurosurgeon telling him that maybe we had found the answer.  Dumb@$$.  I should have remembered that Owen has a pyschic link to Dr. Grant's email account and within an hour of sending the message Owen fell asleep on the couch.  Luckily this was the last day of the EEG so if the sleep was seizure related we should have it on the recording. 

Meanwhile (because there is always more than one thing going on with Owen) we had begun to have poo issues again.  When we last increased his Depakote we immediately began to see a decrease in the daily output.  Right from the beginning we began evasive manuevers and increased his Miralax and number of enemas.  Apparently it wasn't enough.  By the beginning of last week it was obvious that we had lost the battles and were close to losing the war as well so we shifted into high gear with two enemas a day, magnesium citrate and senna added into the arsenal.  On Monday though we realized it was time to run up the white flag and we headed in for an x-ray of the belly.  Sure enough, he had two areas of "very dense matter" as the GI put it.  We were admitted for a clean out. 

So on Monday afternoon we were in the hospital changing diapers every half an hour or less, waiting for the results on the EEG, and three days into another sleepy cycle.  We had a lot of hopes riding on the clean out.  You see we had finally gotten the results of the EEG and if you can believe it, they saw NO seizure activity.  Now that is a small miracle in and of itself because we aren't used to hearing that with Owen, but it also left us with no explanation for the sleepy cycles.  We had one last hope - the tubing for Owen's shunt ends in a big coil in his abdomen.  When you get a backup of poo the intestines expand to accomodate the situation and they can actually expand quite a lot.  This expansion can push the intestine up against the tubing causing a kink which can slow down the flow of CSF, mimicking a shunt failure.  As the mass moves through the intestine the shunt will intermittently kink and unkink so the symptoms will appear and disappear seemingly at random - which is exactly what we are seeing. 

The clean out was successful and at the very least Owen is no longer in constant pain from his belly.  It is going to take a while to tell if the sleepy cycles are over.  He has slept a lot in the last two days, but he just got home from the hospital yesterday afternoon and he has a nasty cold so we need a few days of normalcy to tell if we are in the clear or not. 

So for this Thanksgiving we are thankful that we are all home, that Owen is not in any pain and that my parents are now only 15 minutes away to visit for Thanksgiving rather than 12 hours!

I'll leave you with this recent picture of Owen:

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Meetings and Teletubbies
Yesterday we headed down to Duke to begin a 5 day ambulatory EEG.  Before we spent a few hours hooking up wires we were lucky enough to be able to meet up with the Gareau family.  The beautiful Meagan was at Duke for an infusion today and we were able to say Hi before our appointment.  Below is Meagan and her Mommy Molly with me and Owen:

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And I got in some quality snuggles with Meagan (picture stolen shamelessly from Molly's Facebook post:

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I always feel so blessed when a family allows me to share in the miracle of their little one's very special being!

After our appointment we headed over to the Neurodiagnostics Clinic to get Owen hooked up for his 5 day ambulatory EEG.  The ambulatory bit means that we can take him home and don't have to stay in the hospital.  Of course we won't be spending much time at home in those five days because you have to go back every 48 hours to have the data downloaded from the card - and it's a 7 hour round trip for us so three of the 5 days will be spent on the road.  We thought about getting a hotel for a few nights, but Owen in a hotel is a lot of work and would be very disruptive to Owen, and at least we'll get two days with a normal routine to watch. 

What are we looking for?  We have had several times in the last few weeks when he has acted like he's had a bad seizure, and yet we saw nothing - we are hoping for such an episode this week so we can see if that is what has happened.  We have also been seeing quite a few things that may or may not be absence seizures.  This type of seizure is difficult to determine definitively without an EEG because they are over so quickly that it is hard to say for sure whether or not it is happening. 

Halloween seems to be our holiday that gets trampled on by hydrocephalus.  Here is Owen with his sister at Duke last year on Halloween:

Do you see any resemblance to this year on Halloween?

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I never did get him into his costume this year, it was a very busy day, but he is sporting the same Teletubbie hat!

Here he is sitting on his bed at home, you can see his backpack:

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No, he doesn't have any pants on.  Daddy was starting to put him in his PJ's when I got out the camera.  Why did I get out the camera?  Because he was being so darn cute.  This is one of Owen's greatest talents - he can tickle his own feet:

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We will return to Duke tomorrow and again on Friday.  We're hoping to spend as little time as possible there so that he can spend as much time at home as we can collecting data in a normal environment so we're going to make these very short stops we hope!!!  Now if only they would stop closing large portions of route 86 in NC down to one lane for repaving I'd be even happier!!
 
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