Angelina's Journey
Granulomas are no fun
Months later
Maintaining
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
Well
A plan. We have a plan
Still
Maybe next year
Another day, another .... Nap?

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Granulomas are no fun

August 13th, 2019

Before Angelina left the NICU, she had a granuloma in her trachea, below the level of her trach. They treated this with steroid drops, and upsized her trach tube size. The granuloma was gone after 2 days of treatment, so all was well, and she soon left for the rehab hospital. 
She had a checkup with the ENT on August 2nd, and it was found that there's another granuloma in the trachea. So steroid drops were started again. Saturday (the 10th) she had a major episode and desatted to 49, had to be bagged, all that scary jazz. There was no clear reason for this, and after the commotion of helping her, she was fine, if not a little grumpy when I got there. They set her follow up with ENT for Thursday. This morning (the 13th), she had another episode (only down to 60s, they bagged her up, and she was fine. Again, no specific reason for this. She was examined a bit later, and was wheezing, and had diminished breath sounds on the right side. So now she needs to see ENT sooner, and she might not be stable enough for back-and-forth transport all in one day. So she got transferred to the hospital, in the PICU. She was in rehab for almost a month before needing to be readmitted, so still a win. 
They did a chest x-ray, which did not show any collapse, which is what I thought when they said diminished sounds (plus she's prone to them). She was actually hyper-inflated, which they said can happen when there's wheezing. They did blood work, and took a nose swab and sputum sample for cultures to see if she is developing an infection. Blood work came back and looked fine, but cultures will take longer. Increased her albuterol treatments, gave her one shortly after arrival, and she was much calmer. ENT came up and scoped her. He said that there was about a 40% occlusion, and recommended possibly changing her trach size, as well as restarting the steroid drops and I believe giving her another steroid aerosol medication. He's also going to recommend that the ENT that saw her the 2nd scopes her tomorrow so she can speak to the difference in size since then (if any). 

Luckily, other than the initial assistance she required at the time of the episode, and on the ride over (cause rides stress her out), she hasn't needed extra oxygen or higher settings on her vent. 
She's been sleeping almost since she arrived, I think she's just mad that she's back to having sticky probes on her chest. 
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