Recovering

Well Ty and both girls started perking up Monday which of course meant that I got slammed hard by it on Monday afternoon. I was just the most rundown of the family with hospital stays and staying up almost all night Sunday to get fluids into Evie so SHE could stay out of the hospital. …

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No Rest for the Weary

Prayers appreciated. Both girls started throwing up in the night. Ugh. Aleyna definitely has the flu, but we're not sure about Evie. It could just be from the junk in her lungs working loose. Evie has a fever, though, so who knows? At this point, our main goal is for Evie to just keep down …

Home!

We're home! Turns out the last dose of Evie's IV antibiotic was noon today, so they were fine with us leaving after that! Yay! Evie is very glad to be home and so is her mama! My own bed! My own pillow! Thank you again for all the prayers. We'll now have to wait 6 …

Perking Up

Evie is perking up now. Her fever broke last night, she's needing a bit less oxygen, she's pretty happy and playing, and she's tolerating some feedings through her gtube. Honestly, if she weren't on the IV antibiotics, I'd be pushing for her to go home, but at this point, if she continues to do well, …

Lungs

Here's two shots of Evie's lungs. The first one is from one of her previous hospitalizations for a virus and you can see it's kind of all over cloudy and gray. The second one is from today and you can see the splotches, specifically on the left side where the mouse arrow is.

Pneumonia

Labs came back and it looks like we're dealing with an aspiration pneumonia. Not too surprised since she's been aspirating horribly since the jaw distraction. Minimum of 2 days inpatient while we start IV antibiotics, then hopefully she's well enough for us to switch to oral antibiotics and head home.

Family Trip…to the ER

I know, right? Yesterday evening, Evie all of a sudden got super junky. We were up all night suctioning (I didn't even attempt to sleep). When her nurse arrived this morning and got her up, she got steadily worse. A nebulizer treatment helped some, but not enough for us to be comfortable keeping her home. …

Clarification

I spoke with our nurse practitioner at Cincinnati Children's yesterday and was able to clarify a few things. Evie WILL be having a tracheal reconstruction.  The question that remains is how large of a graft she will need. Will it just be a small one to deal with the collapse above the trach site? Or …

Progression

Here are photos looking down to right above her trach site. April of last year, February 10th scope before downsizing her trach, and today. You can see how much more collapse there is in today's photo.

The Evie Factor

Well, Evie is done and staying the night. We didn't really get the news we were hoping for. Evie's trachea closed back down some, from 4mm back down to 3.5mm so they had to dilate again. And then there's the Evie Factor. In all other scopes, she had a bit of collapse right above her …