Tuesday, October 26, 2010

Josie update

Greetings!  Special thanks to everyone who voiced concern over my mom's hasty dip in the Mississippi.  As it turns out, my mom did take a bus trip with her fellow teacher friends, and there was shopping and eating involved.  However, she refutes the allegations that she joined the Polar Bear Club; contrary to prior claims issued by Aunt Leanne. 

Come on Mama Hop - live a little! 

On to the Josie update: Miss Thang is doing better day by day.  Her oxygen has been weaned down to 1/32 L, which is a negligible whiff.  She is in excellent spirits and is happily modeling her Halloween attire...
 ...while cuddling her get-well-aphant from Aunt Leanne.
Mama Hop, this one's for you:
 As the dietitian observed, "She's used to drowning in a sea of pink.  These Halloween colors are really throwing her off."
What the heck is going on with my feet?!  Someone get a doctor!

Right now we're working with pulmonology, cardiology, and gastroenterology to try and figure out the source of her repeated respiratory distress episodes.  It's far too complicated to get into, but if anyone has any experience with Atelectasis, please email me.  Let me take this opportunity to voice my sincere appreciation for the encouragement, insight, and prayers.
 Josie is getting stronger by the day.  She is so full of life and promise. 
The general consensus is that we just have to make it through this winter and then we can exhale.  We've made the decision to quarantine her until Spring with immediate family being her only visitors.  While it may seem like an extreme reaction, desperate times call for desperate measures and 3 hospitalizations in 3 months epitomizes desperate times.

No worries - Travis has assembled an arsenal of supplies for our self-imposed isolation:
...and that's just my share.  It should get me through next week. 

Just in case you haven't had your daily dose of cuteness, check it out:


  1. I totally support the quarantine!! Very smart on your part!! Thanks for the precious pix and video she is sooo cute!

  2. I agree....quarantine that little one! She is far too cute to be stuck in a hospital this winter!!!!!!!!!

  3. We've been October - April quarantiners for 2 years now...let us know if you need any tips for survival...or board game recommendations. :0) xoxoxo
    LC was in the hospital for her first Halloween. We'll be uber-bummed if the same happens for Josie-Oh. Hope you are home soon to enjoy that counter full of treats. xoxox

  4. "She is so full of life and promise" I couldn't agree more! She's beautiful and I love getting updates. Caleb's first cold and flu season was extremely rough: multiple hospitalizations and a very worried mommy. Through a bronchoscopy, it was determined he had bronchial malacia (floppy airways). He was put on a Flovent inhaler. I think the combination of Flovent and getting bigger and stronger made a difference. Since then, he hasn't had a hospital stay and seems to weather colds just like any other kiddo. I hope Josie keeps getting stronger and they find the right prescription for her.

  5. Ohhh she just gets more and more adorable!!!
    Sunnie in NC

  6. She is too adorable. Glad she is doing so well, praying for answers for you guys and that you are home soon.
    Totally agree with you on the quarantine, who wants more hospital trips.

  7. Hey, that's what winter's for, right? Staying indoors, maybe packing on a few pounds, enjoying the closeness of family. Hardly a jail sentence. ;) So happy to see Josie's most superb smile. Keep her mobile to pop open those aveoli. I wonder if the placement of the G-tube added to the atelectasis because sometimes surgery does that. But I know more about adults from working in an ICU. With atelectasis, the PEEP on the vent or bipap machine would always be a bit higher meaning adding just a bit more pressure to pop open the air sacs. But it's often completely spontaneous. I know preemies sometimes battle with it a lot due to the lack of surfactant - but I'm thinking that's something resolved in the first few weeks or so. I think they actually give surfactant to preemies. Again, I'm not so sure when it comes to the babies, but I agree that if you can hunker down for winter giving her lungs and airways just a bit more time to expand, she'll come out smiling in the spring. My heart goes out to you. :)

  8. So glad she is feeling better. She is just cute as a button. You are wise to go with the quarantine. This season is so hard on the little respiratory systems. We had 2 hospital stays last winter. I'm hoping for less visits this year. Hugs-

  9. Love the outfits!! No, you aren't going overboard on the quarantine. Let me know when you need a night out!

  10. I think the quarantine is a very wise choice. And if you opt out of EI for the season, I don't think it would do much harm - Miss Josie's skills and abilities are remarkable and there is so much you can do with her on your own. Praying for you guys and your little sweetie.