A Wonderful Appointment With GI!

Well, we had our GI appointment today. I love that feeling of walking out of the office with more answers than questions! it's truly a rare feeling to have after such appointments! I think Quinn's GI doctor is my favorite! He's so informative. He doesn't have the "God" mentality and he isn't afraid to admit when he doesn't know something. Not only that, but if he doesn't know, he finds out!

Well, first thing's first, Quinn went into this office completely unconnected and walking around and looking spunky! This is always a good thing when following an admission. She had good color, a good walk, her eyes were bright! The nurse is the same nurse we see every time we go and she commented on just how well Quinn was looking! Quinn's weight is still down from where it was a few months ago. she's coming in at 35 lb. but honestly, i KNOW she is gaining it back because she lost a ton on that hospital stay. She looks much healthier than she did a couple weeks ago so i anticipate that she will at least be a pound heavier in 3 months, God forbid something happens in the next 3 months.

We recapped the last hospital stay. I think i was misinformed because Quinn didn't actually have a true bowel obstruction. It was something called pseudo obstruction (CIPO). He said that her problems could get worse or better. I asked him again about her anatomy in her stomach and if we can fix this. He said that although Quinn's anatomy is different, he feels that this is not contributing to the bowel dismotility, or it isn't contributing enough for a surgery to even be of any benefit. When Q was in the hospital this last time, her entire bowel wasn't moving anything. this was just her stomach shutting down for a little bit, for no known reason other than a probable neuromuscular disease (or mito). this had nothing to do with her stomach's anatomy. the only thing that is concerning about her anatomy is just that the j-tube is harder to put in and has a higher risk of coiling back into the stomach, thus triggering the possibility of more anesthesia.

That was pretty much all we really talked about. he answered all my questions and he said that due to her stomach's unpredictable motility, he wants to try her on something called Flagyl to treat the baddie bacteria so it doesn't grow (only to be administered during periods of excessive distention). This is debatable because One of my long time friends who has a Mito kiddo said that Flagyl is not good for mito children. Since we have no "true" diagnosis of Mito, i'm kinda like... you know, hesitant about trying it and not trying it. She is diagnosed on CCS paperwork, but her case was moved to Dr. Boles in CHLA, on my request, for further investigation on whether or not this diagnosis is a valid one. Sometimes, and maybe only during her good days, she just seems too healthy to have mito. But sometimes, I read her history, flip through her labs and pick through my memories and I think, how could she possibly be too healthy to have mito? I just want to know for sure, once and for all. a straight up answer, no gray areas, no in-betweens, or questionable labs... I just want a doctor to look me in the eye with all records in hand and knowledge of her history and tell me without a shadow of a doubt that my daughter does not have mito. Hopefully, that day will come and it will be a good day. A good, happy, smiley, sunny day.

The above picture is of Quinn and my mom. Quinn calls her MeeMa.