I’m sorry that I’ve dropped completely off the radar here. We’ve had a rough few weeks of trying to figure out yet another part of Evie’s story.
When we were in Cincinnati, Evie was doing soooo well. So so incredibly well. Especially after her nose was opened up. She rarely vomited and when she did (because we suctioned her too soon after feeding), it was generally mucus free. TMI? One of our big struggles with getting Evie to grow is that she has a ton of secretions. And once we learned that her stomach is very small, the pieces fell into place: her tiny stomach fills with all the drainage from her upper airway and then when we feed her, it’s too much for her to handle and she’s already nauseous. We thought having her nose opened up was our miracle fix for all that, but when we came home, she got very junky again and started struggling with feedings. In fact, it was even worse than before we went to Cincinnati. We already had an appointment with Immunology, so we went ahead and did allergy testing and lo and behold: dust mite allergy (and peanut allergy). This led to a frenzied week of cleaning, putting mattress covers on the beds, and getting an air purifier. We started her on allergy meds to try and get a handle on her secretions, but with no change. She kept getting worse.
Last week we had an appointment for her an hour and a half away and we only got about a third of the way there before we had to cancel and go home. Evie could NOT stop throwing up. She wasn’t keeping anything down and her oxygen levels weren’t great. We got her home and she perked up a bit, but we were very very confused. The next day, she finally started showing symptoms of a trach infection. So now we’re treating that. She’s finally starting to get better, but we had a long week of no sleeping and just trying to keep her hydrated.
She’s lost two pounds since we came home from Cincinnati. Her weight is what it was last September. Ouch.
So now the million dollar question is this: Did she have a trach infection brewing since we got back and that was causing all of these issues? Or are allergies really the bigger issue? At this point I have no clue at all. There are just too many things at play. Hopefully by the end of this week, the infection will be gone and we’ll be able to see what we’re dealing with.
Prayers would be appreciated. Hopefully, the trach infection was the culprit and we’re not dealing with severe allergies on top of everything else. Also, please pray that Evie gains the weight back quickly. We’re heading back to Cincinnati in 2 weeks for more scoping and appointments and I really don’t want to put her under anesthesia when she’s this skinny (seriously, she’s so skinny, poor thing).