No Choking!

We got home late last night - one month to hour from our last surgical trip. A perfect Valentine's

gift to everyone. I just gave her a bath and there was NO CHOKING on the water! First time EVER. It's incredible. So, so wonderful.

Coming Home!

We're coming home today! She looks so beautiful - only a band-aid where the trach was. And super, super happy this morning. Thanks, as always, for your support, prayers, and good vibes! Hope to see you soon.

Trach's Out!!!!!!!!!!!
Dr. G. removed it at 8:30 this morning. And she's doing really great.

It's Actually Happening!

I'm starting to get excited now! VeeGee for almost three hours and her sats never dropped below 96%!!!!!! This is really, really great news. She's just singing and dancing - what a super champ! If only we had a drumset in the hospital room, everything would be perfect.

Here We Go

Well, we eventually got a room on a regular floor late last night (sigh of relief!) and we had a "regular" night's sleep in preparation for today. They blocked off her trach at 11:30 (3 hours ago) and her sat levels have been in the upper 90s. She's beginning to fall asleep right now, so now the real test begins, as, apparently it's during sleep that it's the most critical and most likely to not do okay. Just in last few minutes the sats have gone down a bit, but not too alarming.

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!!!!

News!

Lots of news from our family!

We are so happy to let y'all know that A is becoming VeeGee. The adoption process is moving along, and we're hoping to have it finalized within the next couple of months. Our hope is that VeeGee's birth mother will continue to be a part of VeeGee's life, and that, though this will be a difficult transition, peace will, nevertheless, abound.

And in other news, VeeGee began her several day process of decannulation today at Vanderbilt, which means, they're starting to wean her off of her tracheostomy tube. This first day (today) was a bronchoscopy, during which her otolaryngologist looked down her airway to assess for viability. Tomorrow he will insert a modified tracheostomy tube which will force her to breathe through her mouth. They will monitor her for twenty-four hours, watching for signs of desaturation and labored breath. If she is able to breathe normally, the doctor will simply remove the trach and apply a dressing. They'll observe her one more night and then we'll come home. The hole should heal within a month, but if it doesn't, she'll have to have surgery to close it.

During the bronchoscopy, though, Dr. G didn't like the condition of her airway, saying that it was pretty narrow (made him "unhappy"), and that there had been some collapse of the airway above the tracheostomy tube, known as "suprastomal tracheomalacia." This may cause her to be unable to be decannulated without another surgery called Laryngotracheal Reconstruction. In this type of surgery, the narrow areas of the glottis or subglottis are opened up, and carefully shaped pieces of the VeeGee's rib cartilage are placed to widen the narrow areas. The recovery from this procedure is fairly lengthy.

Dr. G said that he had seen a few patients with airway's as small as VeeGee's who had done well enough to avoid further surgery, but he wasn't overly confident that she would be able to do so. There are also complicating factors, he thinks, with her lungs, which we already knew to not be in the best condition. So, there may need to be a pulmonologist pulled in to the team.

She's just woken up from the anesthesia and is very active, so I'll sign off. We're not getting a room tonight because the hospital is full, unfortunately. Pray that we can get one tomorrow morning! Thanks, as always, for your love, encouragement and support.

Name Update

Well, after quite a bit of soul-searching and lots of late night talks, K and I (together) have decided to go through with changing VeeGee's name. We're not using the name that I had *adamantly* insisted on, though. I'm so, so much happier with this new name that we mutually chose. That's what I wanted all along, for us to do this together and for it to have meaning to him as much as it does for me.

And the transition is going well. The new middle name/nickname has the same ending sound/syllable as her old first name/nickname, and when I ask her, "Are you *new name*?" she nods enthusiastically. AND she can say it so much easier than her old nickname.

So, today, we're telling the in-laws. Should be interesting. I'm thinking they're gonna hate it, but they never even said the other nickname right, instead calling her "insert terrible automobile name here" which is just awful, right?

I'm feeling very peaceful about this all. Finally.

AND tomorrow she gets her trach out!!!!!! HUGE MOMENT!

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.