Saturday, May 14, 2005

Yet Another Water Fight!

The day started with Rissy crawling into bed with me. It was so nice to wake up to a hug from my little one! When Bailey was doing her schoolwork, Marissa and I walked to the IUPUI bookstore, then over to University Place for lunch (Bailey had a lunch date with her nurse, Leslie), and then we took a ride on the train to Methodist and back. She loved the train! She wanted to ride again, but we came back to Bailey's room just in time to join her for lunch outside in the courtyard. It was so beautiful out! We sat at a little table under an umbrella and absolutely enjoyed the outdoors.

Then several members of her medical team met with us today to see what they could be doing different/better to make our stay here more enjoyable or easier. We didn't really come up with anything. We are being kept very busy with different activities - there's not really a chance to get bored here. I think maybe they're starting to feel sorry for us. I don't know if I was supposed to say this, but I told them we were having a pretty good time here (as you can see from all the stories). They just laughed. We're really low-maintenance people. Our expectations and demands are very low - I think they have to be to get through a situation like this. We just live day-to-day, trying our best to enjoy every moment possible. The staff helps tremendously. I've seen signs ever since we've been here saying that the nurses here at Riley (maybe all of Clarian) have attained Magnet status. I just learned yesterday that only 3% of the nurses in the United States earn Magnet status. Apparently it's very difficult to get, and our nurses have done it! They had a pin ceremony yesterday to hand out pins, and they asked Bailey if she wanted to participate in handing them out. She did, of course, and the boss of the nurses (I've never seen here around here before - she must be the "big boss") told them how proud of them she was and that they should be proud of themselves. Then Bailey and I told them that we were proud of them too, and they said that coming from a patient, that meant even more. They are really incredibly gifted people around here. I would like to take them all home with us when we leave.

The 500 Princesses came to visit Riley today, and they had to wait outside Bailey's room while the nurse finished up her dressing change. While they were waiting outside the door, Dr. T comes in and we exchange griefs for a few minutes. Then Bailey tells him that Nancee (her nurse) ran over her Berlin Heart cord with "the cart" (meaning, the 180-pound-or-so big blue box with wheels). He misunderstood her and he thought she said "car". He was obviously quite alarmed and concerned (we couldn't figure out why he would be so upset because we weren't aware yet of the miscommunitation), walked around to the cord and said, "Ok, where did the car run over the cord?" We all busted out laughing!! "Not car, cart!" After he calms down, a huge flash of lightning lights the sky, and he says, "And you know you should never be outside with the Berlin Heart when it's lightning." We all look at him - again, like he is an alien. I have no idea where he thinks we go with this Berlin Heart that we would get hit by lightning!!! or a car would run over the cord!!!

After the laughter died down a bit, he started to walk out of the room, and Bailey flicks him with water. Ya know, she just never, ever learns. He says, "Oh! Oh! You wanna do that?!" as he's walking over to the squirt guns by the sink. He grabs one and just stands at the door and pummels Bailey until the entire thing is emptied. She tried to run, but with the Berlin Heart, she didn't get very far! And we didn't wait on her!! Her nurse and I (holding Marissa) ran for the door and took cover. When he's finished (keep in mind, Bailey is sopping wet!) he simply turns around, sees the Princesses and that they saw the whole thing, hands the nurse the squirt gun, and walks away as if nothing happened. So Bailey gets her picture taken with these beautifully-dressed and made-up, pink, crowned princesses, while she is soaking wet. It's an interesting picture. I'm not sure what kind of picture that painted for the Princesses though . . .

Josie came tonight to spend the night with us - we're having a slumber party!! Rissy's already asleep, and we're watching the movie "Sweet Home Alabama" to get geered up for Patrick Dempsey's visit!

They didn't do anything with her PIC line today. Not sure why - I just don't think "our people" could get in touch with "their people" - I just think the timing was off. I guess it's not a big concern for anyone.

Bailey's getting some more IVIG tonight (to reduce her antibodies). She might be a bit nauseous and a headache in the morning.

Going home tomorrow - catch you Sunday evening. Have a great weekend everyone!

Love, Angie


Blogger Lara said...

Angie - It's just amazing to me that you find the time to tell us these stories (funny or heartwarming or serious) that are so comforting to us. I think it just makes us feel better to know how well you all are handling this, because I'd imagine myself a basket case if the situation was reversed. But you tell us stories and they make us laugh or cry or smile or think. Thank you for sharing this with us!!

Have a good weekend!


(and I ALSO learned from this BLOG that M&M's come in dark chocolate. I found some tonight at ToysRUs - it's 11:00 and I'm going to have to go find the bag!)

12:06 AM  

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