Back to the hospital

Owen will be returning to Children's Floating Hospital on Monday.  After his long day of tests on December 9th, we thought we were done with life in the hospital.  If I have learned anything from Owen it is to expect the unexpected.

As I have mentioned before, Owen is having seizures.  Unfortunately, they are getting worse and more frequent. This past week he had a seizure on Monday, Tuesday, and Wednesday.  When an episode happens, he is starting to lose consciousness and that is why we are re-evaluating our decision of no further testing.

We have been going back and forth with Owen's doctors for a few weeks now about whether these episodes are actually seizures.  When he was first admitted to the hospital, they did an EEG on him (for only about 40 minutes).  Owen actually enjoyed it.  The EEG consists of someone placing about 32 sensors, each about the size of a Skittle, all over the top of his head with a Vaseline-like glue.  Owen loves having his head rubbed and I believe he thought he was getting an extra special massage. At that time, the EEG showed no sign of seizure activity - not surprising since Owen had never had one.

About two weeks after he was released from the hospital, Owen had his first seizure.  It was frightening and lasted from start to finish about 30 seconds.  He has since had many more. I have stopped counting, which means he has had far too many.  After each one, we call his neurologist and palliative care doctors and describe the behavior.  They agreed that these sound like seizures, but were not convinced and suggested we try to video a seizure for them to watch.  This is much easier said then done.  When your child is in the middle of a seizure the last thing you are thinking of is, "Ohh, run and get the camera!"  Last Tuesday night, we were finally able to capture one.  It was a four minute seizure where Owen turned blue and did not breathe for the first two minutes.  Beyond frightening.

We diligently tried to send this off to his doctors, but the quality the video, when emailing it, isn't great because it is so large.  Or maybe it is because we really don't know how to email four minute videos- we are not part of the YouTube crowd.  Regardless, it has been decided that these episodes are one of three things: seizures, reflux posturing, or an exaggerated startle reflex.  Pete and I feel very confident we know which one it is, but of course we are not doctors so there is a bit of doubt in our minds.  The only way to know for sure is to do another EEG on him and have it record one of the episodes.  Back to the hospital we go.

The main reason we are doing this is because if these are seizures then Owen is clearly telling us what his MRI didn't.  He is letting us know his disease is progressing and he needs more help.  If this is reflux or or an exaggerated startle reflex then we would obviously treat these very differently.  We hope that our stay on the PICU will be short in length and are eager to be home with our family in time for Christmas.