Freak Out

Weslee just came up to me, freaking out. Sobbing. He is super nervous about the Cleveland Clinic visit and is convinced he is going to die there. Surrounded by gawkers and fluorescent lights. Away from home.

I tried to reassure him... that it is just another EMU visit, but at a different hospital with a different team of doctors and only one test he hasn't had before. And a fervent hope for answers.

If you can help get us there and back, please click here. Thank you.

TC Seizure Captured

We got the big one. HUGE tonic clonic. The picture shows him in the post ictal stage... body stiff, nobody home.

We should be able to go home in a day or two. Will put him back on his meds, possibly slowly as to not overwhelm his bod. 

Any more seizures between now and discharge are bonus!

EMU Stay Commences

Weslee is all checked in at the emu ward in a local hospital. He has been in this one before, and they are pretty good. Slid through registration, got his "fall warning" plastic bracelet, then up to the room.  

A flurry of activity ensued. One nurse to take a history and list of current meds. Another to get him settled in the bed with a hospital gown on.  (He could just wear a button-down shirt but prefers the gown as they are easier to change.) One nurse started the IV, which is necessary to give him seizure meds during the more nasty ones. I usually participate in all of the conversations.  Multi-task-hearing-conversing seems to be a requirement.

Side note: Part of his autism thing: He is convinced a freckle in his inner elbow popped up a few years ago because of so many IVs in the same place, so that's where he wants all future IVs. AND....the tape that comes with IV makes him itch so he has a lot to tell the nurse about that, and gives out options that some nurses are kind enough to at least pretend they will consider.

Once all of those were done, an EEG tech comes in with all of the wires/leads, stinky glue and other supplies.  It takes about an hour to attach them all at the proper places, and check to make sure all are correct and working. I require the room door to stay open as otherwise, I will pass out from the glue fumes.

So...

Two seizures in the last two hours...and this is with him still on all meds. Hosp/Dr. will withhold meds tonight and tomorrow morning in the hopes to get a TC (tonic clonic).

They already have enough data to show that while he has always only had seizure activity on the right side of the brain, the EEG now shows significant activity on the left.

EMU stay arranged

Weslee is scheduled for a hospital stay (the EMU ward ... Epilepsy Monitoring Unit) in May. So I started packing. Why so far in advance? Because he is also on the cancellation list. If someone cancels, we will get a call.

Testing will be from 3-5 days. As soon as he settles in, he will get into a hosp gown (his preference), they will put in an IV so they can administer emergency seizure meds when needed, and the tech comes in with the horribly stinky glue to attach the EEG leads to his head.

Then every time he starts a seizure, he (or more likely, I) will push a special button that marks the time in the recording (audio and video, plus the EEG readout) for analysis purposes. This also brings a nurse running.

They will try to induce seizures. They may or may not discontinue medications that evening, although they might wait a day or two. They also may or may not let him sleep that first night (sleep deprivation). They will also do other things that rarely work for him anymore, like flashing lights or blowing on a pinwheel to cause a lack of or reduced oxygen.

When they get enuf data (or when the insurance gives the directive), he is discharged, hopefully back on his meds for at least 24 hours.

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This is his 8th (?? 9th??) EMU visit so I know just what to take for the both of us. Two suitcases, one duffel, my purse and Weslee's murse. At the last minute, we will grab our electronics, charging cords, and pills to put in the purple suitcase.

Light at the end of the tunnel.

Well, a pinlight.