Decannulation Update

11:26AM
VeeGee's pretty rattly this morning, but they're still going through with capping her off. She's been capped for about 10 minutes and is still at 98/99 saturation. They said that if there was a problem it wouldn't necessarily manifest right at first. I'm feeling like I've got to be super vigilant (more vigilant? is that possible??) to watch for signs of stress. But, she's babbling and watching Elmo, so, so far so good.

9:28PM

She dropped to 95 for a while after her breathing treatment (odd?) but is now sleeping and at 97 for a bit. I think this is actually going to happen! I can't really believe it. It seemed like we'd have the trach forever, and now it looks like my sweet little champ is going to go home trach free on Thursday. It feels too good to be true.

I know we've got a long night ahead of us - she just dropped again - but I'm really feeling positive. And it feels GREAT!!!!

Decannulation

, we're one week away from decannulation! We cannot believe that it's happening so soon. We've been very worried because A has been struggling with some pretty intense respiratory issues. We weren't sure if she would recover in time for them to clear her for surgery. But, as of today, she's really starting to be her old self again. It's nice to see her perky. A new milestone's been achieved, too, since the nissen surgery in January: A is now 25 pounds. That's the most she's weighed in her life, and it marks a nine pound weight gain since she came to live with us. We're so proud. We'll keep you posted on the next surgery, which should be our last for a good while.

A New Life

So, home for a couple of days and A's still recovering well. We have hit one little bump in that she's having trouble with retching when her stomach gets overfilled.

Basically, we're having to relearn how to feed her. So, wish us luck with that. I'm concerned that her stomach is still not processing as well as it should (only one bm since we've been home, and just not able to push all of the formula that is required). However, I have faith that this will get better. I'm a member of a mothers' message board for special needs kiddos and the feedback that I've gotten is that the retching might not ever get better. I'm trying to be okay with that, and, I guess, the retching is actually better than full-on vomiting. We're still waiting to hear from the otolaryngologist about scheduling decanulation (trach removal). Hopefully that will be very soon, though we don't want to push it too hard. Thanks, again, for all of your prayers, good wishes, and friendship. It is really meaningful to have so many wonderful people offering support. We truly appreciate it!