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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