Tuesday, April 17, 2007

We're home

Yes, we're home!!

The doctors were able to capture on EEG and synchronized video several of Alice's typical seizures. Since we were there only a full 24-hour cycle, it's still apparent that she's having multiple seizures daily, some of which we can detect and some of which we can't. Most of these seizures are localized to the damaged right side of her brain, but some of them spread and involve the entire brain. They were able to determine that the visual disturbances she complains of are, in fact, seizure-related symptoms. The video/EEG was ongoing for the full 24 hours and they noted that she also had seizures while she was sleeping. These two determinations were valuable ones, and will give us more of an edge in dealing with her problems. At this time it does not appear that the condition is degenerative (which is something I'm thankful for).

Here are a few photos chronicling her stay at Children's Medical Center in Dallas:

This is Cale. He fastidiously and methodically placed a zillion little leads on Alice's scalp, carefully putting her hair in rubberbands. The leads were held in place by a sort of "superglue" stuff, then covered with tape to prevent them from becoming dislodged. Then her head was bound up in gauze and fabric tape.

Here she was enjoying some chicken noodle soup from the cafeteria. I was impressed by their meal system there; instead of one choice for everyone in the hospital, they actually have a "room service" system where you order exactly what you want from a menu with lots and lots of yummy choices.

MamaSue came to visit around suppertime and brought a TON of goodies to occupy Alice's time confined to her room.

To try to induce seizures, they brought in lots of different "triggers" at various times. This was a strobe light that they flashed into her eyes at different speeds and rhythms. They actually want the child to have seizures so the EEG and video can capture it in progress and figure out just exactly which part of the brain the seizure is occurring in.

And looking out her hospital room window, we got a phenomenally cool view of Big D at night. Monday night was relatively clear, so we could see downtown in the distance. This morning was a different story; foggy and wet and low visibility made it just a gray soup.

What I liked about CMC:

The staff -- our nurses, techs, even custodians were super people
The food -- for institutional food, it was outstanding
The artwork -- there were several very cool displays and murals; I wish I'd thought to get a photo of one particular giant mosaic that was incredibly beautiful, but I think I can remember it long enough to make a rough sketch and hopefully recreate it somewhere sometime.

What I did NOT like about CMC:

Internet access -- there should have been free public wi-fi throughout the building. Instead, there were three little PCs up in the hospital library where people could access the internet, and the filter would not allow Blogger access. This is just unacceptable. Many families today use Blogger instead of complicated mass e-mails to update family and friends on the condition of their chronically-ill children. Iowa Methodist Medical Center / Blank Children's Hospital in Des Moines didn't have wi-fi, either, and I just think that's no longer an option for a cutting-edge public facility like a hospital.

And that's all, folks. Thanks for praying!!!

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