Evie, Evie, Evie. Why? Why do you insist on throwing curve balls???
First the non-curve balls.
CT scan this morning went smoothly. Child Life put on an episode of Yo Gabba Gabba while they started anesthesia and she barely even noticed people were around her! All went fine during the test and we got to be with her both as she fell asleep and woke up. The only issue they had was getting a good stick for injecting the necessary contrast dye into her veins. I counted at least 10 jabs. So so glad she was asleep for that! She decided to go straight from anesthesia into a nap and we spent an hour or so in recovery while she slept.
Later in the afternoon we had our consults with GI and pulmonary. I was always glad that they had all three specialties work together, but I really only thought of them in regards to Evie’s trachea.
There’s a look that we’ve seen time and time again from doctors in regards to Evie. It’s a bewildered look that says “Whhhhaaaat?” and we saw that look A LOT in the consult with GI. Now this is not someone who just doesn’t have enough experience. This is a doctor who has seen hundreds of CHARGErs plus tons of other complex kiddos. Every new bit of information we gave him made him pause and you could tell he was just trying to figure out how all the pieces fit together. We’ve always had issues with Evie vomiting, but had always attributed them to the trach. He has some other theories and possibilities. He explained quite a few, but the two that stood out were the possibility of a bad placement of her gtube in her stomach or that she’s not actually physically able to get food/secretions into her stomach due to esophageal problems or issues with her fundoplication (which was put in place to help with reflux).
Further explanation: Evie had issues with her gtube getting sucked down into the stomach exit (the duodenum) back when she had a gtube with a balloon on the interior. Her surgeon mentioned that her stomach was shaped a bit oddly, but no one ever mentioned it again since switching to a different gtube style solved her problems. The GI here thinks it’s possible the new gtube is still blocking and/or hitting the duodenum which would slow her stomach emptying and possibly make her vomit. The solution to this could be as “simple” (*not actually simple) as redoing her gtube placement with another surgery.
Further further explanation: Evie has what’s called a Nissen fundoplication where the top part of the stomach is wrapped around the eseophagus to prevent refluxing. This was done when Evie got her gtube as testing showed she both refluxed and aspirated and they worried about her getting pneumonia or being unable to breathe. If this is too tight, she might not be able to swallow her secretions so they just sit in her espohagus until they gag her and then she throws them up. The force of that brings up some of her food as well. It’s also possible that this could be happening, but because of issues with her esophagus rather than the fundoplication.
Too much info? Yeah, we thought so, too. It was a great appointment and we learned a lot, but boy, was I exhausted afterwards. I’m trying to adjust to the possibility of finding more issues and dealing with yet another diagnosis. Overall, he said he just needs more data and he’ll be able to see quite a lot in the scopes tomorrow. It’s very possible he’ll want to do some other testing while we’re here as well.
Pulmonary didn’t really have any surprises, which was nice. Evie’s lungs sound great and looked very normal on the CT scan, so all good news, but it doesn’t mean we won’t find something in the scopes.
So….yeah. It seems like it’s always the appointments that I think are just routine where we get hit with new things. We’re doing okay, but now we’re nervous about what will be found in the scopes tomorrow in regards to her trachea AND GI system.
So prayer requests:
We have another rough night ahead of us with feedings at the last moment before she has to stop all feedings for surgery. Pray we don’t get too run down and can actually sleep in between those feedings (10:30pm, 2:30am, 4:30am).
Pray for Evie tomorrow and her reaction to anesthesia. She’s never had anesthesia two days in a row before and anything new makes me nervous.
Pray that any issues found tomorrow are FIXABLE! Pray that they see hope in what they discover.
Pray for us to be able to clearly understand and remember what they share with us after the scopes.
And pray that we can get back to the hotel quickly after surgery and rest.
Thank you again for all of your prayers!