episodes not epileptic; atypical migraine with autonomic features could be considered

The above title is an excerpt from the final hospital report, which confirms that no seizure activity was seen during the hospital stay. There are still a few tests filtering back in but the tests looking for evidence of a carcinoid continue to be normal. During the vodka-induced spell, blood tests show high levels of hormones - the big question is why they are high.? Given the continued normal results for a carcinoid, looking further in the thymus just doesn't seem to be wise at this point.

We'll be following up on the headaches with a doctor at the Diamond Headache Clinic here in Chicago. Shawn has an appointment on July 28. In the meantime, he's going off as much medication as possible, down to one blood pressure medicine and the migraine medication. Blood pressure readings continue to be normal, even when he's feeling bad, which is very encouraging.

Don't Blink

Something about listening to a live performance under the stars on a beautiful summer night - it transports you to a better place. Last night was one of those nights. Who could ask for more?

One of my favorite Kenny Chesney songs - which he played last night - is "Don't Blink". It describes so well how fast life is moving.

...
I was glued to my tv when it looked like he looked at me and said
"Best start putting first things first."
Cause when your hourglass runs out of sand
You can't flip it over and start again
Take every breathe God gives you for what it's worth

Don't Blink
Just like that you're six years old and you take a nap and you
Wake up and you're twenty-five and your high school sweetheart becomes your wife
Don't blink
You just might miss your babies growing like mine did
Turning into moms and dads next thing you know your "better half"
Of fifty years is there in bed
And you're praying God takes you instead
Trust me friend a hundred years goes faster than you think
So don't blink

Poets and Pirates Tour

We're here at Soldier Field for the Kenny Chesney concert, also featuring Keith Urban, LeAnn Rimes, Gary Allen, and Luke Bryan. While it rained off and on this morning so far the weather has been great. We're all set for a perfect night of music.

Home Sweet Home

Preliminary report shows no seizures.  Migraine is another possibility that is being investigated by trying migraine medication to see what effect it has.  Also waiting for the blood and urine tests - these won't be back for awhile as they have to be sent off to the Mayo.     

Meanwhile, we are now back home, finishing up the last urine test here.  It feels VERY good to be back home.  

Happy Hour Part II

There was some confusion about the blood draw yesterday, so this morning we repeated the alcohol challenge - this time I managed to get a good picture of the bottle! They must be really wondering about Shawn down in the pharmacy.

We managed to get two separate blood draws this time so maybe it's all for the best.  

taking a walk

Looking north from Northwestern's Feinberg building; you can see a little of the Hancock building and Water Tower place out the window in this photo.

Watching TV with Arie

Happy Hour

The vodka from the pharmacy came in a bottle that looks like cough syrup. I'm not sure it tasted much better, but it did make Shawn turn very red, gave him a headache, raised his pulse and produced lots of the wheezy coughing. What it didn't do is raise his blood pressure very high and they did not take blood during the hour that he was red. So I'm not too sure how successful the data gathering portion of this experiment was but the reaction itself was rather dramatic.

chewing gum

So who knew that Shawn wasn't supposed to be chewing gum? No one told us...

When Shawn asked for gum yesterday I did first think "is there any reason why he can't have it?" But Dave and Shawn both pointed out no one ever said don't chew gum - so I gave him a stick. Must have been about 30 seconds later, possibly a full minute, and in comes a nurse. She looks at Shawn and asks "are you having seizures in your mouth?" and proceeds to hold out her hand with a paper towel on it, universal symbol for "spit out that gum!"

I may never chew gum again without thinking of "mouth seizures."

here till Wed?

Had to restart the urine collection at 5 pm; at this point it looks like we'll be here till 5 pm on Wednesday.

Here we are

As you can see from the previous post, Shawn's latest hair style is quite colorful, I think he should ask to keep them in when he's done, by the end of the summer all the cool kids will be wanting wires sprouting out of their heads. Maybe I'll try to braid it...

He started urine collection at 11:30 so we're here until at least then tomorrow. The doctor this morning said we might be here for 48 hours, depending on how it goes in the first 24.

We can use cell phones after all, although they don't want Shawn talking on one - so I have my cell on.

There was some legal issue about the alcohol but I believe the final word is that they can order it from the pharmacy and that will be ok. The plan at the moment is to see what happens today and then try the alcohol tomorrow with lunch.

All hooked up and ready to roll...

no cell phone this time

I just read the instructions for the monitoring at Northwestern tomorrow - no use of cell phones in the room. Also laptops can only be run on battery, so I'm not expecting to be online too much; I will try to post some updates if I can though.

more urine testing

I don't know the entire sequence of events, but I do know that after careful instructions from Shawn's doctor, the lab managed to mess up what chemicals were to be put into the collection jars for the latest round of 24-hour urine tests. I also know that there were many back and forth calls between the doctor's office and the lab, the office and Shawn, and that Shawn made two separate trips to the lab and was yelled at by the lab technician that according to HIS book said what he was doing was correct...

I believe all of yesterday's collection was worthless but the jars he has for today are ok. So we may have to still do a second one next week.