Even if Brenna hasn't literally been screaming for 5 straight days, it sure feels like she has.
The poor girl is miserable (and therefore her parents are miserable.) And no one can pinpoint any specific reasons at this point.
Yesterday, I was so glad to finally have Brenna's GI appointment, and it went really well. I felt like her doctor and dietitian really took the time to listen to me, and they were humble enough to admit that we would just try some trial and error with the feeding tube and even if they don't have all the answers at first, we will figure out a good solution eventually.
Her dietitian even asked me, "What is your gut feeling, as her mother?" That was refreshing and made me feel like my opinion and observations were worthwhile.
A major "outcome" of the appointment is that Brenna will be having an ultrasound done on her belly on Tuesday morning. Her GI doc said that by feeling around her stomach, Brenna's liver feels enlarged and low in her body. I'm not sure what that might indicate, so we will see what the ultrasound shows and go from there.
She will also be having a urine analysis and bloodwork done, to see if those numbers turn up anything that might correlate with her liver or GI system.
Additionally, we are trying Neocate formula, which is a very basic hypo-allergenic formula, to see if that makes a difference with anything.
In the meantime, we are just trying to keep Brenna as comfortable as possible. She is still very puffy, which makes the doctors suspect a protein deficiency, but thankfully her puffiness has decreased a little today. Hopefully we can get some fluids to drain now, and with being back on fuller feeds, hopefully her protein levels will return to normal.
I think being so puffy is making her skin even tighter and therefore causing her to be in a lot of pain, judging by her high-pitched screams whenever we touch her or pick her up. It's breaking my heart to see her so uncomfortable and inconsolable.
I'm really looking forward to getting all of these tests done to rule out any problems or find solutions to any that exist.