Airway Update and Giggling

It’s been a while! And for good reason: we just haven’t had much to update. I’ll write up a post about some of our summer adventures, but we had no hospital stays, no surgeries, no major medical concerns of any kind and it.was.amazing. But we can’t walk away from it all forever, so we headed back to Cincinnati last week to take a look at her airway and figure out our next move.

First we checked in with Evie’s surgeon who did her exploratory surgeries and bowel resection. She couldn’t be there herself because she was needed in the O.R., but her nurse practitioner was extremely happy with how Evie is doing and said we don’t need to come back unless we have concerns. Yay!

Then we had appointments with her GI and pulmonologist, both of whom were thrilled at how BIG Evie is looking. I mean, she’s just HUGE now. She dropped down to around 23 pounds after the bowel resection while we were waiting for her bowels to wake up and now she’s a hefty 33 pounds! She just looks so so healthy and everyone was stunned at the change. We all keep saying it’s like she’s a completely different kid.

Hard to even look at how skinny she got after the bowel resection as we waited for her bowels to wake up! Now she’s just a tank!

The next day we had the scopes themselves and I was very nervous about them. We hadn’t looked at Evie’s airway since November of last year and I just didn’t know what we would find. Well, it certainly wasn’t horrible, but her aspirating is still a big concern so we need to take more drastic steps to help that. In December we’re going to do 3 things.

1) Remove Evie’s submandibular salivary glands. It’s pretty common in CHARGE for there to be excessive secretions. When that’s combined with the inability to swallow properly, all of those secretions dump into the lungs, which is Evie’s issue. Now, we’d love for her to learn to swallow properly, but at this point, she’s basically drowning in those secretions. You can imagine how difficult it would be to learn to swallow with a constant stream of junk overwhelming your system. Hopefully if we cut back on those secretions she can learn to manage them better over time.

2) Evie has a little…divot of sorts by her vocal cords. I think they’re calling it a mild laryngeal cleft. Normally when your vocal cords close, they close off the airway, but Evie has an extra space that allows fluid to still pass them. So we’re going to stitch that up and see if that helps the aspirating as well.

3) Evie has some scar tissue above her trach site that they’re going to remove. It technically shouldn’t make a big difference in opening her airway, but you just never know.

Evie’s Nissen Fundoplication has also stopped working. This is where they wrap the top part of the stomach around the esophagus to stop reflux. Evie’s was only ever a partial Nissen because of how small her stomach was/is, but she had a lot of stuff up in her esophagus during the scope. Her GI thinks it’s just from all the trauma of the last year. The violent vomiting, the constant scopes and surgeries, it all just stretched it out. At this point he doesn’t want to redo it (which I’m grateful for), but it means we will need to stay on continuous feeds for now (which I’m fine with). Not good news, but not horrific news.

Evie had stopped tolerating her speaking valve over the last year and since we hadn’t looked in her airway, I didn’t want her to push her to use it in case she wasn’t able to exhale properly. We did a quick test to confirm that she was in fact good to use it and now she’s doing great with it! She’s vocalizing a lot more and not needing nearly as much suctioning. She’s also getting LOUD! Good heavens, she can really yell when she’s mad about something! She’s exploring her voice a lot, much like a baby babbling, just trying out different sounds, so hopefully we’ll start to see some progress towards talking? Maybe? I honestly don’t really know. Evie is always full of surprises!

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