Sunday, May 1, 2011

Day +38, De-Sats

As much as you try not to think it, some days feels like you're in a Party of Five season when the producers are scrambling for ratings and demanding the writers stir things up. Other times things seem  manageable, like they're going to get better.

Reality: Every day there's a pit in your stomach; every day you fool people.

Here's the update:

Gabrielle's little lungs are having a tough time with things right now. This past December a typical (and rather innocuous) cold ran through our house. Amy, Jimmy, Mickey, and I kicked it in less than a week's time. For Gabrielle it took a month. Then there was the February respiratory scare.

Recently we learned that a portion of her right lung collapsed when she had her line put in.  So, when she got the corona virus on Day +15, not only does her I-Cell predisposition make healing from respiratory ills difficult, especially when she doesn't have an immune system (i.e. chemotherapy/transplant), but the semi-collapsed lung is adding to the problems.

So today the team is quite concerned with her breathing. She's really struggling and working her whole body to get the air she needs. There's a lot of fluid in her lungs and airways. At last word they're treating her like a patient with an asthma attack (i.e. just can't get the oxygen into the blood no matter how hard the lungs work). Things will get better, then worse, then better ... but her lungs are quite full and weasy.

To help you understand what the videos below, we're talking about her oxygen saturation levels. Almost all of us have our oxygen levels at 100%, and they'll dip as low as 94-95% when we sleep (desaturation, or "de-sat").  While the dipping is normal (and the machines make it seem 10-times worse than it really is), the concern is there and real.


  1. Thanks for the update, thinking about you all constantly...keep posting...and give Gabby big hugs and kisses from Auntie Chelle xoxo

  2. Praying for healing for Gabrielle's lungs. She's so beautiful, and such a fighter. I wish that the BMT process was simple and pain free. Thank you for sharing it with all of us. It must be hard to write about some days. Love and hugs to you all!!

  3. Thank you for the update Regan, I know it isnt always be easy to do. We are constantly thinking positive thoughts that Gabrielle feels better. Breaks my heart hearing her having difficulty breathing- she's definitely a fighter. Sending you all big hugs, xx

  4. We hate seeing you look so tired, stay strong sweet Gabrielle. We miss you and we want you to come home
    Love love love love love you!!!
    Auntie Julie, Uncle Ben, Sarah, Anna and Max

  5. We are thinking of you always Gabrielle and we are sending you all the energy that we have so you can kick this. You are such an adorable, sweet little angel.
    We love you and your family with all our hearts.
    Love Auntie Stephie, Uncle Jamie, Ethan and Charlie

  6. Thanks for sharing. Our dear little Gabrielle. She is more alert than I expected. Prayers and positive energy are with you all. love you xxx grandpa David

  7. Saying lots of prayers for Gabrielle, hoping those lungs heal soon.