We actually were discharged yesterday and were home in time for dinner because Soren performed so well!
We were admitted on Monday afternoon. Soren was hooked up to the EEG/telemetry and his PET scan was scheduled for the next morning at 8 am. Their plan was to get that scan before Soren had any seizures. Once the scan was done, we were going to drop out Soren's drugs and get seizures on record.
Well, Soren had a different plan. After We an uneventful night (though not really very restful), they took Soren off right on time for his scan. He hadn't had his morning meds yet and I thought it might be better to get them in after the scan. They got the IV into his arm and as they were stabilizing it, Soren had a seizure. It was a short tonic seizure and we caught it on the EEG and video.
The only problem was that we now couldn't do the PET scan because the readings wouldn't be accurate while he was post-ictal. So back up to the room he went. At this point I was very frustrated and kicking myself for not giving him his meds (though this wasn't the cause and I knew it). Soren then had 4 more seizures, giving them great examples of how he seizes (what a boy!). With those on record, the neurologist decided we should give him Diastat to stop the seizing and get him back down to the PET scan.
So we did that, got him back down stairs, knocked him out (not that he was that awake) and did the PET scan. Then, as he was still sedated, they shuttled him even further into the bowels of the hospital and did the MRI. Wham! Bam! Done! Soren was brought back up to the room, woke up, ate (his first meal of the day) and they gave us the boot!
The preliminary readings are inconclusive. The EEG indicated activity on the right side of his brain, the PET scan showed nothing, and the MRI showed something on the left side of his brain. Ugh! But they are going to get the complete results, compare all the tests, and have a meeting on Monday about if he's a surgical candidate.
Yesterday, before the PET and MRI, my hopes were very high. Now, after the preliminary results, I'm trying not to get excited or disappointed.
Soren is in great spirits today despite the insanity of yesterday. I'm exhausted. So we're just going to lay low today.
Thanks for all your good thoughts!