New Concerns Added to the List

Last night Annie seemed to be rather content without any Lortab! So she went to bed without any pain meds, but was coughing quite a bit. Around 1:00am or so, she must have thrown up although neither Justin nor I heard it. What did wake us up was her persistent coughing. We went in to her room around 1:30am when her cough became so fast and repetitive that she was struggling to even catch her breath. Unfortunately, her cough was also so very weak that it wasn't productive enough to cough up any of the phlegm and congestion that was in her throat. We knew we needed to get her upright, so we quickly changed her diaper full of diarrhea and sat her up on the edge of her bed. She loaded her diaper again just after we sat her up, got her cleaned up again, and then I rocked her for over an hour trying to help her get her breathing under control.

I'm not sure if she completely aspirated in the night or not, but we're continuing to be concerned about her aspirating because of all the vomit and her inability to give a productive cough. Pneumonia is not something we need to add to her list of issues right now! We stopped her overnight feeding as soon as we got in her room at 1:30am and kept it turned off the rest of the night. This morning I decided to give her only pedialyte to see if she would tolerate it better and hopefully not vomit as much today.

So far she has tolerated the pedialyte a little bit better, but she has still had several episodes of retching and dry heaving. Also, as of so far today (it's now 1:30pm) she has not had any urine output. Which isn't too surprising given how much she vomited the last couple of days, but after being on pedialyte for over 6 hours, I was expecting at least a little output. She still continues to have a normal temperature.

I'm growing impatient with the lack of progress she has made being on so many meds for the last 9 weeks. Today I decided to google c-diff and see what other treatment options we might consider since the standard treatments just aren't working. Big mistake. I'm now even more concerned about Annie's health after reading about how fatal c-diff can be if left untreated. And how colon inflammation can be fatal or require surgery for a colostomy due to too much damage of the colon. Our GI has continually said he's concerned about her terrible amount of inflammation, yet he's in no hurry to try anything but a 14 day course of an antibiotic she's already tried! He's even mentioned that with so much inflammation like she has, there very well might be an underlying problem other than the c-diff. Why he keeps putting off wanting to discover that, I don't know.

So, now with the risk of aspiration pneumonia and dehydration upon us, if she isn't clearing her airway and urinating by later today, I'm hoping to finally be able to get her to the ER and admitted to the hospital. Then, ideally, we'll have immediate access to infectious disease doctors and she can have her colonoscopy and upper GI scope without making us wait several more weeks as currently planned.

Please continue to keep Annie in your prayers... that we can get into the doctors she needs, and that the doctors will be inspired to know what is wrong with her and how to best treat her. We appreciate everyone's love and support.