Another update

Thank you so much for all the sweet encouraging comments, your support and concern for the Bean means a lot to me and I really appreciate and love each of you.

Izzy is still receiving a high dose of Versed that keeps her heavily sedated and she is still intubated and still sporting the Joey-the-mobster look due to the white hairnet that keeps the electrodes on her head. I wish I could put a white wife-beater on her to perfect the look, but she has too many needles and wires sticking out of her. The electrodes need to come off for two or three hours today to give her skin a break: we will shampoo her hair and comb the sticky gook out of it to prevent scabs. Thanks to SingleDad I had bought some of the No Rinse shower cap thingies that he once recommended on his blog, so it will hopefully make the intubated hairwashing project much easier.

The good news is that the Bean's brain responded to the heavy sedation and stopped seizing nonstop. The next step is to wean the Versed gradually and hope that Izzy's brain won't bounce back into status epilepticus. If she goes back to the constant seizures then the next step is the pentabarb coma, an option we are all hoping to avoid.

Even under heavy sedation Beanie is being her feisty self. She periodically tries to open her eyes, grab stuff and Houdini herself around. Before the sedative totally knocked her out and she was still conscious, she looked like she had a couple drinks and smiled and tried to play with the nurses and the therapists. She really believed this hospital stay was just a big party thrown for her.

The hospital where we are staying is about 45 minutes from our home, much farther than the other two hospitals in our area, but Izzy's neurologist and pulmonologist both have privileges here and we were able to call them to have Izzy admitted and start the EEG right away. While the hospital building itself is less fancy and less comfortable than the other two facilities, the staff, the doctors, the nurses and therapists are top-notch and they are providing excellent care for the Bean, which is more important than a beautiful Ronald McDonald room, state-of-the-art parent lounge with snacks or a huge, wide-screen plasma TV (sigh). I really believe that we are at the best place and I'm grateful for the great care and the love that Izzy is surrounded with.

While I was sipping my fifth cafeteria coffee at the tiny, uncomfortable parent lounge, trying to stay invisible and thus give some privacy to the crying teenage-looking couple waiting for news on their baby, I was thinking that the hospital really needs a "special" room for the PICU parents, especially for those to whom the doctors can't say anything encouraging. The special room should have a great assortment of cocktails, specialty drinks and medical marijuana, and insurance should pick up the tab.