Friday, August 13, 2010

August 13: Day +42

Well, we're all pooped over here. Bella, particularly.

Turns out, we over worked her and over drained her. Oops. Wednesday, she did her first pressure support trial for 1 hour. Yesterday, she did three trials at 90 minutes each, totaling 4.5 hours. That's a rather big incremental jump after being on total support for 38 days. So, today, she was pooped out! We even weened her versed and she needed ZERO bumps all day till dressing changes later this afternoon. She couldn't even hang with the pressure support today. She just didn't have the strength.

On top of that, her weight this morning was 10.6. It was 11.3 yesterday and she was a net negative the past two days. They have adjusted her "dry weight" to be 11.0 (kilos) to account for growth. She was 10.7 when she came in. So, she was below her dry weight at the start of the day, but the docs all wanted to keep pulling fluid off her on Prisma. I asked why we would do that (since we pulled too much off this time LAST week), and Dr. Tolar said he wanted her as dry as possible. So, we kept pulling fluid off through the day, and by this evening, Bella's blood pressure just tanked. At some point this afternoon, I was just scratching my head as to why we were still pulling fluid, and a minute later, the renal docs called and switched her to net zero. Guess they were thinking the same thing. However, even then, she's still losing fluid through evaporation, so it was too little too late.

By 8pm tonight, Bella's blood pressure was lower (60s over 20s) than I've seen it at any time in the hospital so far, and the nurses were transfusing saline into her blood stream to try to increase her blood volume. By the time we left, they were starting to get her pressure a little more under control.

She is still sooooo delicate. There's a reason it's called the ICU, and there's a reason we're still in it. Have you ever been getting over a cold, rallied, and realized you weren't as well as you thought? It's that dangerous time where you feel better than you really are, so you go back out into the world, and then realize you're totally drained from doing one errand, and head back home and collapse back into bed. I feel like that's kind of what's going on with Bella. She's been down for so long that everyone wants her to get off this breathing tube and get better. However, when she shows a glimmer of recovery, we seem to get a little too aggressive with the window we're given, and we overcook her a bit.

We had this EXACT conversation last Sunday morning in rounds. We had pulled off so much fluid, the surgeon on Saturday had to tilt the operating table to get enough fluid in her femoral vein to put in her line. We can only go as fast as Bella wants, not as fast as the docs want. Her spirit wants out, but her body isn't equal to the challenge just yet. So, it's time to slow down and let her recover a little before pushing her some more. Hopefully, she'll be stable and peaceful through the night, and we can take the morning off and see if she gets back her strength.

Meanwhile, Ali and I are heading out of town tomorrow to stay with my friend Dayna and her family in a small, midwest town about an hour away for an overnight excursion into Americana! We can't wait to walk down main street and maybe stop for some ice cream! I don't know what Dayna has in store for us, but I'm sure it will be AWESOME! I'll fill you in from Dassel, MN tomorrow night!

In the mean time, here are a couple more links to articles that showed up today:

Minnesota Public Radio: Click here

The Globe and Mail: Click here

Fox News Twin Cities: Click here

Will you do us all a favor?

On most of these articles, you can SHARE them through your facebook or twitter page (or digg or whatever your social networking site of choice is). Would you take a minute and SHARE at least ONE of these articles with your network? We've probably NEVER had this much national exposure for EB in two days, and in our ADD culture, it'll be long gone by Monday. Sad, but true. So. PLEASE PLEASE PLEASE read one article and share it with your network... or send out an email with a link in it. Whatever your style is.

Thank you,



  1. Hang in there little one, we're still here, still praying, still sending endless love and blessings. Hang in there Dad, its not over till little Miss Bella says it is, and we're here until she does..:) have a wonderful time with Ali, looking forward to more positive news...slow and steady...blessings to all, and especially Bella, beautiful baby girl, who will be well!

  2. Stay strong Bella! Man, what a fighter! I know she will get thru this little bump in the road to her recovery. She's gotten thru much worse. She's super Bella! Lots if prayers on the way. Have fun with Ali and post lots of pics.

    Take Care,
    Amber McLaughlin,CA

  3. Tim, I've been placing comments on as many as these articles as possible to direct people to this blog and to Daylon's. Maybe others can do the same. I'm hoping you can get a new round of followers out of it. Have a great time tomorrow with Miss Ali, sounds like a great, much deserved getaway. Love to all, Jen.

  4. These kids seem to have amazing you said, she is tired. Great seeing you all tonight.

  5. Thanks for sharing the links! I am glad to see the awareness spreading. I am hopeful!

  6. I did a big shout-out on my blog to all the EB kids (Bella, Daylon, Tripp, Elle, Jonah) I follow and will share a link on Fbk!

  7. What a bummer about her fluid issue. There's no happy medium with these kids, is there? I'm excited for Monday and Bella's extubation!! Woo-hoo! They just need to get her off the dang prisma so she can go back to 5D! Hopefully, we'll all be celebrating over there next week...TOGETHER! See you guys around the halls! Love, Jenn

  8. Hi! This is my first time commenting on your blog! I check it several times a day though! I hadn't ever heard of EB until I stumbled across Jonah's blog over a year ago. All of these kids have been pulling at my heartstrings so hard. My heart just breaks into a million pieces for them and their families. I appriciate you (and the rest of the EB parents) who allow me to follow your sweet kiddos. I am in constant prayer for all of you and think about your kids and your families so many times every day. Bella has an amazing spirit and so do you! You have such a way with words. I wish there was more I could do to help. I am in Colorado, I am am going to be contacting the RMH to see how I can help them out. I also think there is an EB clinic here at The Children's Hospital, so I may contact them and see what I can do. Thank you again for sharing your sweet family with us strangers, as a Mom, I am so touched!

    Kristi G.