August 14: Day +43

A tale of two worlds...

In the 10x10 world of Bella, the day started with daddy in rounds at 9am. Seems like the consensus was that a) we tired Bella out on Thur, and b) we dried her out on Fri. Sorry, Bella! We hoped that she was a little stronger under there than it turns out she is. So, the plan for the day was to let her rest, aside from half of her bandages getting changed and changing the dialysis circuit. I did half the bandages yesterday so that Bella would only have to be off the circuit for a shorter period of time. So, the plan was to take her off at noon, do dressings, then put her back on at 2pm. They were going to hold any further pressure support trials till further notice.

So, I left the hospital at 9:30 feeling pretty good about the day that awaited Angelique there, and looked forward to getting Ali and me out of town. We headed out of town at about 11:30, and the fun just kept coming. We met up with my friend Dayna and her husband, Brent in a little town called Darwin in time to catch the local town parade and visit the world's largest ball of twine (by a single person... much controversy in the twine building world).

Bit of providence here... Dayna was one of my internship partners in San Diego 2 summers ago, but just recently moved back to MN where she and Brent are from. Brent recently got a job as a researcher at the U of M and whose team does he work beside?

Dr. Tolar's.

Anyhow, after the parade, we headed to Brent's parent's house on Lake Minne Belle in Litchfield, MN. It is just the cutest place, and Brent's parents are two of the sweetest people you'll ever meet. We promptly got on our swimsuits and hit the water!

After playing in the water, building sandcastles, tubing, an amazing dinner, riding a sunset cruise around the lake, and a campfire with songs, stories, and marsh mellows, Ali hit her pillow HARD. See below for all the pics. P.S. All pics taken by my friend Dayna. She's GOOD!

Meanwhile, back in room 1 on 5C, Bella was not having as much fun. First, they didn't turn the circuit back on till 4. As they were setting up to put her back on, she started getting really anxious and wiggly again. Bella can tell when she's going back on Prisma, it shows. Then, her heart rate went up and her wiggling got even worse once they started the circuit. She went through wave after wave of agitation, then calm, then agitation again, all the while her heart rate elevated. The team SWEARS she didn't have another transfusion reaction, and who knows, maybe they're right, but there's something she's not happy about, and it is such a mystery to figure it out. So, Angelique left not really knowing what was bothering her so much or what to do about it. Last night, we left with her blood pressure too soft. Tonight her heart rate is too high.

Sigh.

So, in a tale of two sisters, their day today couldn't have been more different. However, one day, they will ride a tube together, laughing, and one day, Bella will say, "Yeah, when I was born, I had this rare condition, but when they brought me home from the hospital, it went away."

Good night.

Check out the parade wave!

The great Ball of Twine... awesome

Does my life jacket look good, daddy?

My body doesn't see the sun too much apparently... cute moment, though

One of the greatest shots of the day...

Queen of the Waves!

I can't bear to watch my daddy EAT IT on the tube!

A beautiful sunset on the lake...

Ali power-napping with Dayna's dogs on the boat...

Upon her second wind, Ali leads story time...