September 25: Day +85

Heaveno!

Wow. What a moment. Picture me standing next to my bench this morning looking out over downtown on my way to the hospital. It is at this spot that I used to read your comments (when there was 5-10 a day), then talk with God about the day. This morning, my prayer to God was this: Please, God, don't let yesterday's blood pressure be a fluke.

Here is what I walked in to...

My heart jumped and my spirit just soared around the room. I have never felt so 'light' as I did this morning walking in to this scene. Remember, at the beginning of the week, Bella could hold her blood pressure up while she was awake, but it would TANK when she fell asleep. Well, this morning, she was comfortably in a deep sleep, and her blood pressure was ROCKING!!!!! We are already on less then half the phenylephrine we were on just 2 days ago, and just one step away from completely D/C'ing her precedex!

Even though there is some discoloration, her left leg has never looked the same as the right leg, until now.

The change has been no less than a miracle in my book. From my family to you and yours, THANK YOU for being the CAUSE of the miracle. It wasn't until we started reading your letters of support to Bella that things started turning around. I was reminded of the scene in Ocean's 13 when they read to all the letters of positive affirmation to Reuben and he makes a dramatic recovery. I know it's a spoof movie, but it has really worked with Bella! Just this afternoon, Bella's pressures started to wane a little, so Angelique read to her today, and sure enough, BOOM! Back up it went!

Ali coloring the tape to help the dialysis nurses see where the Prisma circuit needs to be after they are done.

In other news that's not so hot, Bella's Prisma circuit crashed today after only being up for 1 day. Turns out there was/is a GIGANTIC clot in her dialysis catheter. That's the one sticking in and out of her right shoulder. They had to take her off the circuit, and the are putting TPA in the lines overnight to try to break up the clot. If it doesn't clear by 6 am, we're heading back into the O.R. first thing tomorrow morning to get a new line placed. Let's hope they clear the line; no one wants another trip to the O.R. if we can avoid it.

So: visualization/meditation/intention/prayer request #1: No clot tomorrow morning.

Outside the hospital walls, we took a trip on the Minneapolis queen riverboat today, and got to go through a locke. That was cool! Being in essentially an elevator powered by water for boats is an awesome thing to behold. I am not of the engineer mindset, but a locke is definitely the stuff of Modern Marvels (although someone is bound to tell me lockes have existed for millenia). Ali had mixed emotions over the trip. I think it's because she had a hot date with Collin afterward and wanted to get to it! LOL.

Check out the kids' ramp and bumpers for the gutters! Kid - Friendly Fun!

So, after the boat, we brought mommy back to the hospital to take care of Bella. Ali and I went to Collin's home and we all went bowling, then Deb and Spence invited two other families over and we had a big party that included dinner and a camp fire! It was awesome. The Kerstens are just an amazing family, and their friends couldn't have been nicer. It was so nice to sit around and joke and laugh and be in a normal setting for a change where the stakes aren't so high. It was r-e-l-a-x-i-n-g. For that, I am so grateful. Plus, to watch Ali just beam throughout the afternoon and evening while playing with the 5 other kids there... magical. Ali is truly a magical little girl. She really hits it off with Collin's daddy, Spencer, and to watch the two of them together is really sweet.

We really didn't want to leave, except Ali was so tired, and I knew there were more than a handful of YOU ALL that were waiting for the blog to post! :) I am so beat from a fun filled day that I wanted to skip posting and go to bed. However, you are too important to Bella to skip out on, even for one night. I made a pledge that I would update every single day we were here, and I expect myself to live up to that pledge. When we were reading other blogs of Rafi and Sam while we were considering coming here, I hung on every new update to help me decide whether or not this was a good idea.

Know what? After 83 straight days in the PICU, I still think it was a good idea. Look at the waves Bella is sending out throughout the world?

God night.