In an effort to save myself some time I have copied and pasted notes written to our families while Sean was in the Minneapolis VA in November 2008.
Sunday: Sean and I are leaving this morning for a trip to the Minneapolis VA hospital where he will be monitored for a week to measure possible seizure activity. He has weird episodes where he is “zoned out” and then really confused. These episodes might be absence seizures. He will be hooked to monitors and videoed for a week to record his brain activity.
Tuesday: Sean is confined to the hospital with 23 electrodes glued to his head and under 24 hour video/audio monitoring. He’s a good patient and had several episodes the first morning to show that neurology staff what they are dealing with! He can move from the bed, to the chair, and back. He was sleep deprived yesterday, allowed two 1-hour naps during a 15 hour period. Not sure if they will continue this. He is in very good spirits. The neurology team keeps coming in to do the pin-poke test on his arms and legs (to gauge his decreased sensation in the extremities) and nodding their heads in general confusion. He is a mystery, it seems.
I feel so bad that Sean is stuck in that dingy hospital room with nothing to do but watch crappy cable. He will be sleep-deprived again tonight, so he can sleep for @ 2 hours between midnight and 2 PM tomorrow. He is off all meds, including those for abdominal pain and headache. He was seen by GI due to the abdominal pain (the pain he always has), so he can’t eat or drink tonight and will have a CT scan in the morning. Can’t quite figure that out since they told him leaving the room would ruin the brain testing, but they are taking him out anyway. But through it all, he remains happy and friendly.
Wednesday: Today did not start out well. Sean had an episode that involved the staring, then he felt sick and finally he was semi-alert and aware, but was struggling to talk and sounded like a stroke patient. This lasted for about 45 minutes and then happened again later in the morning. The rest of the day was uneventful. I’m glad they are getting all this on tape, and mostly I’m glad that someone besides myself and the kids is finally witnessing these events!
I have to laugh, though. The doctors keep poking him with the pin, and pushing or pulling on his arms and legs, or shining the flashlight in his eyes and saying “Hmm…” Is that a good sign? Several times today, “Hmm…”
Thursday: No significant episodes today (couple very brief almost-episodes that went away almost as fast as they started), but a rough day none-the-less When I got to the hospital I said, “Hi, how are you?” Sean replied, “No sleep, no food, no coffee, no meds.”
They did disconnect him for an hour for the CT scan of the abdomen. I guess it doesn’t really ruin the brain testing, just pisses off the lady who is in charge of hooking/unhooking him from the monitor. Sean had an allergic reaction to the contrast injection so he had to be given some Benadryl…during his period of sleep deprivation. “Here, take this sedative…now be sure to stay awake!”
When he was finally able to go to sleep, he couldn’t do anything more than doze as his head and stomach were causing him great pain. This afternoon he was extremely nauseated and dizzy. I hope he will be able to get some sleep tonight.
They will release him sometime tomorrow. Hopefully the doctors will be able to tell us something, but realistically they will probably need to write reports and send them to the neurologist in Sioux Falls who will then schedule a follow-up with us (that could take at least a month). Not sure if they will make any recommendations on the medications, but since they took him off cold turkey and he will jump start again this weekend I don’t think that can all be good for his body.
Friday: Scratching heads here….
The doctors discussed the week’s results with us before discharging Sean. Apparently the episodes Sean has been having are not the typical type of seizures that send out measurable electrical impulses in the brain. Sean’s episodes are not sending out those electrical impulses. There was no questionable acitivity measured this week. None. This does not mean he has no brain activity (he doesn’t think this joke is funny…) just that during all the spells, including the one where he couldn’t speak, there was no unusual activity in his brain.
The good news is that since those impulses are not going out, they are also not doing damage to the brain. More good news (and we’ve heard this phrase before) is that it may or may not improve over time.
So where does that leave us? These are not seizures, not epileptic, not neurological in nature.
They recommended Sean go off all meds and see what happens…we have chosen to see our regular VA neurologist and polytrauma physician. They also made a firm recommendation that Sean does not drive until he is free of these episodes (6 months MN law, 12 months SD law) and can safely drive without vacant spells and the ensuing confusion. I am backing this one 100%. The kids and I have been trying to convince him not to drive for several months. He does not appear to see things around him, and drives recklessly.
So in the end it is good news, yet we don’t know what to do with it.