Wednesday, August 11, 2010

August 11: Day +40

Playing dress up in the playroom...

Well, 38 days in the PICU, and today, we finally made a real step towards leaving this place for good! Bella was taken off the ventilator for 1 hour today to see how her lungs would respond after a month holiday. They did GREAT!!! When I asked Cindy, her respiratory therapist, how she did on her "trial run," she responded, "Perfect." We'll TAKE IT!

Bella's numbers are all looking really good, and her V.O.D. seems to be well handled. Today was day 21 of the defibrotide treatment, which looks like it did the trick! Tomorrow, Dr. Tolar returns on rotation for 2 weeks, and he will most likely take her off it, since it looks like it has done its job.

She ended up with +800 for the day in fluids yesterday due to her "transfusion reaction," so we tried to play catch up today and pull as much of that off as we could. The good news is that her blood pressure is now much stronger than a week ago, and can handle the dialysis much better.
The challenge right now is that Bella has a wound in her airway from the breathing tube. She got it during transport either to or from surgery on Saturday. She has been bleeding from that spot since Saturday, which is a little disconcerting, but she is on two blood thinners, and she has been moving quite a bit. So, having said all that, the game now is how to continue to march toward extubation with a wound that is getting agitated every time Bella gets a little "light" on her sedation, while backing off enough on her sedation to get her breathing safely on her own.

Bounce house at RMH in the gym after dinner...

Here's my intuitive 'logged-more-hours-by-her-side-than-anyone-on-staff' take on it. She is recharging her batteries very quickly right now under that big heated blanket. I can 'see' her vitality growing with each day. She is giving off the signs that say, "I'm not waiting for my kidneys to be 100% before getting off this stupid tube!" I have little doubt that she can go off her ventilator in a couple of days WITHOUT rolling back her sedation any further. She has always been ONE TOUGH KID, and that constitution is prefect for moments like this. That's my take, but what do I know? ;)

Need I say anything???...

Okay, off to bed. Need sleep. Stay tuned for more tales from the tundra in the summa.

Good night!

When Ali heard the other picture looked like Ariel...


  1. Between Bella and daylon tonight...I'm a happy camper!
    That last picture of Ali though? The icing on my cake. The time change in Ohio is making your updates "late" for me. But Its my bedtime story that can't be skipped. Past midnight....I need sleep too! Goodnight!

  2. Jack and Molly's NanaAugust 11, 2010 at 11:33 PM

    Like mother, like daughter for Sara and me. I've spent the whole day sewing new pillows for the office at the preschool my sister directs. But I, too, always check in with you before I shut the computer down for the night.
    So happy that things are going so well this week! And glad to see you having some Ali time! Can't wait to see what tomorrow brings.

  3. So glad Bella's vent trial went great today! I'm gonna let Daylon know and maybe he'll be motivated to take big leap forward tomorrow! Who wants to be out done by their girl?! :) LOL! Loved the boucne house picture. I hear about it every week but I've never been! That things the real deal! Goodnight! Jennifer

  4. Hi Tim:
    You should be wearing a white hat, not a black hat. The GOOD guys always wear the white, and you my friend, are an awesome GOOD guy. Love the way you protect and support your girls. You love your 3 girls so much, and I sure do respect you for that.
    Hope all goes well the next few days and beautiful Bella can get off the ventilator. Praying that the wound in her airway heals, God Speed. Take care guys. Love Leah's Nana

  5. Bella is such a little fighter!! Wonder who she gets that from...hmmm?? Great news about her trial run on the ventilator! Prayers for her wound to heal as quickly as possible, and for steady progress in getting her off the ventilator for good. Little Ali is a kick to see in the mermaid on the rock pose...I had to laugh out loud! Blessings to all, especially Bella, beautiful baby girl, who is getting well!

  6. Lynne, Bob, Jack and BenAugust 12, 2010 at 6:29 AM

    Hooooooray for Bella!

  7. Most of you probably already know but the paper which includes the first 7 patients in the trial came out today. You can read it at this link:

    There have also been several stories in the media including an article in USA Today:

  8. Saw the EB feature story last night on the local news station Fox 9 in Minneapolis! Praying that Bella will be out of the PICU soon!

  9. oh oh.....Jonah's mom Patrice did a great job of linking to all the articles on her blog. Click the link to Jonah's blog on the right and you can read all the coverage. Thanks Patrice!

  10. Great news! I am so glad Bella is such a fighter. I am continuing to pray for you and your family. I hope you are able to exit PICU shortly.