I couldn't decide which picture to post so I thought I'd share them both. :) In a rare occasion tonight after Faith's bath she kept her hooded towel on. Always the perfect poser, look how she has her hand perfectly angled to cover up her "not for internet" parts. (I think I typed the same thing a few months ago!)
I hadn't planned on writing about Faith's pulmonary appointment, but when I checked my e-mail this morning I was touched by the number of people who actually wanted to know! I didn't think people cared that much (and I don't mean that in an Eeyore sort of way) appointments are just appointments these days, but this one was a little bit exciting!
The plan with the Faith and the ventilator has been to let her grow, develop, and hopefully her bronchial malacia will decrease and she eventually won't need the positive pressure the vent provides. It's not that Faith cannot breathe on her own, she needs the pressure to stint open her floppy bronchial tubes. For some time now we've suspected that she might be able to do more on her own than she is receiving. So after some discussion, yesterday at her appointment we took her off of the ventilator (and just on 1/2 liter of oxygen) for seven minutes! Last year at this time Faith was on a rate of 24, and if disconnected would turn blue in a matter of seconds. What a difference a year makes!
To help get her through the winter, Faith will be receiving an inhaled steroid (Pulmicort) two times a day(Thank you for the suggestion Karen! And Ann and Janay for reiterating it!) as well as her monthly snagis shot.
Above: "Hey- you have one of those too?" Below: Ms. Marissa shows off her PMV.
Below:(L-R: Marissa, Milo, Noel and her mom, Tina). It wouldn't be a trach gathering without the group picture meltdown. And Faith wasn't even there to pull hair! Once again Mr. Milo is the typical guy, "What's with the drama ladies?"
Have a wonderful rest of your week!
Brian and Jen :)