Angelina's Journey
Granulomas are no fun
Months later
And now we work
Not Great News
G-tube feeding and seeing the lip
Surgery day
GI study
GI study
Snag in the plan
We have a plan
Slightly mistaken
Holding pattern
Tough few days
Tough few days
Tough few days
Hanging out
Sleep study
A plan. We have a plan
Maybe next year
Another day, another .... Nap?


Follow up

August 14th, 2019

Today, they scoped Angelina again. They tried to downsize her trach tube to see if it was just "too big." With the smaller one in, she was having more obstruction. So they put the original back in. Still obstructing. Thing is though, she had a Bivona trach, which is flexible. This flex was allowing it to scrape against the rear wall of her trachea, causing irritation, and the granuloma to form. Combine this with her tracheomalacia, and she's getting a ton of blockage, since it's something extra in an already floppy airway. So they switched her to a Shiley, which is much less flexible. Since it's more rigid, it will likely stay more squarely in the center of her trachea, and no longer irritate that back wall. 

Since switching it out, she has been able to lay flat, and maintain her O2 sats. Being high enough angle-wise has been a major thing I've been concerned about, I feel like she's never up enough, and I'm constantly asking for the head of the bed to be raised, as she usually sats better that way. While there, I witnessed her "desat" twice. Once was while she was startling upon waking up, and she went down to 90%. She was also moving around, so I'm not sure if that was even a "true" desat. The second was when the nurse moved her pulse ox probe from her foot to her hand. So of course, not a true desat. I'm used to seeing 3-4 dips an hour, even down to just 90%. That didn't happen today. Her volumes are higher too, which is a reassurance that the Shiley switch was the right thing for her, better air intake. 

She will be treated with the Ciprodex drops for another five days, and they do not anticipate having to do anything further for the granuloma. They think it will resolve on its own, with no longer being irritated by the tube. I am so insanely optimistic that this was the final hiccup in the journey to getting her home. Though of course, we still have to get the supply company stuff going, and the nursing staffing sorted, and finish our training. (Can you hear my head-spinning hysteria?) 

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