Tuesday, September 7, 2010

September 7: Day +67

Heaveno! (Seems more fitting than Hello... HA! never thought of that one before)

Well, another good day into the books! Not only did they wean her vent again today from 15 down to 10, they did a one hour pressure support trial where Bella initiated all her own breaths, and she did GREAT! When the fellow ordered the pressure support, he said her blood gases were "Pristine." PRISTINE, BABY! I had him say it twice, it sounded so nice (kinda like "Moto Moto..." who gets it? Who gets it? First one to comment correctly on where I lifted that one gets my undying love and adoration)

In addition to this, we D/C'd the norepi AT LONG LAST... I think it's been like a week since we said we were going to do that. Better late than never, right?

We also snuck in a Prisma circuit change this morning, and changed all Bella's lines, headgear, and leg dressings. I have to give kudos to our nurse, Breanna (sorry if I misspelled that), for a job well done today. It was her first time with Bella, and she had A LOT to do, especially with a morning circuit change, and she never once lost her cool, and was very responsive to my million and one requests.


... and rescheduled for Tuesday.

Still, We'll TAKE IT!

I called it a "stay of execution," and reiterated how BAD a candidate Bella really is for a trach. Sure a trach would be good for someone in this situation... someone other then BELLA. Someone who doesn't have EB, BMT, and 3 kilos of FO (fluid overload) all at the same time!

Call it wishful thinking, call it a hunch, call it parental intuition, but my gut tells me Bella knows something's up, and is really trying to do her part to avoid the trach. Right now on her current sedation settings, she is very alert when you take her blanket off... and when I say alert I really mean PISSED OFF. She is one angry kid under there when you disturb her, and I don't blame her one bit. She is SICK OF IT. She is ALL DONE with being poked, prodded, and sucked dry by machines 24/7. She wants OUT. Again, am I projecting? Maybe, but I have also noticed her energy change in the past 72 hours or so... she's fighting more. This is a good thing. I think it means she's regaining some of the fire she had when she was moving toward extubation last time around. She really slid backward for several weeks, and no doubt something was (and still is) causing her capillary leak, but despite that, she just "seems" to have more fire inside.

I think it's the eye contact as well. She made some prolonged eye contact with me yesterday and particularly today that left me feeling really connected to Bella, like she knew I was there and what I was saying to her. She is so swollen, she can't really display much facial affect at all, but when she peered through her swollen eyelids today, there was a focus and intensity present that was definitely not around when she would open her eyes wider a few weeks (and pounds) ago.

So, Bella remains a mystery to everyone. For as no one can figure out her capillary leak, no one can figure out why her lungs are suddenly tip top, despite all her fluid.

Ooh ooh, that reminds me... I saw her neck today! Seriously! I saw ALL THE WAY into the crease! It was crazy, I know. We were rolling her back onto her back from dressing her ulcer when she just craned her head back a little and the rolling and craning exposed an absolute cheese reservoir in neck. I got all excited and had the respiratory therapist hold her in that exact spot while I dipped some 4 inch gauze pads into my 50/50 saline peroxide solution and WENT TO TOWN cleaning those gutters! Oh, MAN, was that satisfying. I haven't been able to get in there for WEEKS. I know that sounds terrible, but I just can't get in there... THAT'S how much fluid is on her chest, in her neck, chin, face, etc. I've stopped taking pics when I have the head gear off because, frankly, it doesn't look anything like Bella, and it is a little upsetting to see how swollen she is. I remember being freaked out how swollen she was on transplant day... that was NOTHING compared to now. She is beginning to blister frequently now all over due to the FO, and we knew it would just be a matter of time.

In other news, please say a prayer tonight for little baby Tripp, our JEB brother in LA. He needs to have another eye surgery tomorrow, and it's breaking his momma's heart. Please pray for his healing and safety, pray that his doctors might see the opportunity to learn from Tripp so that they may better serve future EB kids who cross their paths, please pray for mommy Courtney and daddy Randy, that God calm their minds, and soothe the pain in their hearts that only they and God fully know. Courtney blogs about Tripp HERE. Please stop in and leave a comment of support for the whole family, would you? Thank you very much.

Also, remember to visit our friend Sara's page for the CHOC Walk coming up next month. She is raising money in Bella's name under the name TEAM BELLA. Come walk with her, or make a donation. We are honored that Sara wants to walk in Bella's name this year, and we salute Sara for getting out into her community and taking a stand (or even a walk) for something she cares about. Sara is pretty amazing and we love her dearly. I could spend an entire entry detailing the acts of support and amazing things she has organized and done for our family. Please take a minute to learn about her and her wonderful family at her blog.

While I'm on a blog-plugging binge, I want to talk a little about the EB soiree going down on 5D WITHOUT US right now (some nerve). There are presently 4 other kids with EB on the unit, all under the age of 6. Daylon, Rafi, Payton, and Elle. Please take some time to read about their incredible journeys, and find out in what way you can pray, offer support, generate positive thoughts, whatever fits your style. We are family.

God night. (freudian typo - figured I'd leave it)


  1. Moto moto....Madagascar?
    (which, by the way, I watched with Ali at your house, while hang
    Ing with your girls).
    I think I already have won the prize...thank you for your shout out and compliments. It's very touching...and I literally teared up. Although, I always do when I log on....it's really been amazing being a teeny tiny part of your journey.
    Glad the notes from church are coming...everyone wanted updates :)
    You are all in our hearts....

  2. Madagascar 2! :p My son watched that movie about 15 times a day for a month.

    You sound so upbeat tonight and I take that as a very good sign. Bella seems to really be responding to her impending (but I have a feeling not going to happen) trach.

    Sending more prayers your way, and to baby Tripp. He is so sweet, I love his videos and knowing the frustration his mommy is having about this surgery has to be rough.

    sleep tight Bella girl!

  3. 'I like to move it, move it' 'Moto Moto'

    Sorry I havent commented in a few days...we were out of town and I didn't have my laptop. However, I was reading Bella's update on my phone, in the teeny tiny print....I'm so addicted to the updates!!! So HAPPY to hear that Bella is doing well...yippeeee!!! Also, I tried clicking on TEAM BELLA/Choc Walk link several times, and the page doesn't come up? I am VERY interested in joining TEAM BELLA- Sara, can you please send me info as to where I can sign up, etc?
    Sleep sweet & sound Bella!

  4. That is definitely Madagascar 2. I have seen it with my daughter Beatriz (who is 4) hundreds of times! She just loves it!

    It is really visible through her progress that Bella is re-gaining strength. And it is also visible that YOU (and Ang) are re-gaining strength. I missed your inner-light in your last posts but now I can see it shinning again!

    And I am pretty sure that Bella can see (feel) it too!

    Keep it shining. Bella will get back to her friends in 5D, in no time!

    Carla, from Portugal

    PS: I still need to reply your request on “What Bella has taught you”… I know exactly what she has taught me, I just need to find the right words. But it will be an honor to be on Bella’s Guest Book. As soon as I have it right I will send you an email.

  5. What an outstanding update. You sound so UP and so much calmer. I know that beautiful Bella will be coming around any day now.
    Keep the Faith. Take care guys and hang in there. God Is Good. Peace and Love. Leah's Nana

  6. God night...God morning...and God afternoon. That's what it's all about - having Him as a part of everything and acknowledging Him in everything.

    It's good to read some positive news! Keep looking in your precious Bella's eyes and making that connection. That will keep her fire stoked as she works toward getting out of ICU.

    Blessings to all and praying for healing,

    A friend in NC

  7. What a relief to read of Bella's progress.

    To be locked in again in "Bella's Gaze," which penetrates deep from her soul to yours, is a great gift. God is very "present" in that gaze, and is sustaining you both. God morning!
    Lots of love and prayers for you all,

  8. P.S. Thanks to Ali, I too, have watched Madagascar, over and over. I have fond memories of the dance Ali does while watching Moto, Moto.

  9. Yeah! What a great post. So happy to hear Miss Bella rallying to avoid the trach! If anyone can do it, she can. Praying for her continued improvement today and always.
    My family and I can't wait to walk for Bella on October 17th!
    Love you all,
    The Vanderbooms

  10. Praying hard for PEE-URINE. Come on Kidneys start to work!! Bella you are doing so good. Now lets get the fluid off and get that vent out so we can see your sweet face and voice again. We miss you Bella.

  11. A poem for Bella

    There is a young angel called, BELLA
    Her Dad is one lucky Fella.

    Her Mum and big sister are so lucky too....
    And the Family stick together,
    Like a big pot of glue.

    The poor Little darling is not feeling so well
    But the doctors and nurses are treating her swell.

    Her Family and friends give her sooo much love
    Not to mention a whole lot, from the ONE above.

    Ali, her sister is so brave and strong.,
    Backwards and forwards she skips along.
    Singing to Bella and giving her hugs
    So Little Bella grows stronger, and needs less drugs.

    From London we send you this little poem
    And can't wait for the day that Bella goes home.

    Lots of love from Lolly Adamopoulos