Here's what it boils down to: According to the gut doc, as I like to call him, something is wrong, and it could be not a very big deal, kind of a big deal, or a huge deal. Now we just have to find out which it is.
Tests have been done. Procedures have been scheduled. My nerves are a bit shot. I just keep reminding myself about the part where he said "it could be not a big deal." We have our fingers and toes crossed.
After our marathon doctor appointment day last week (two doctor visits and lab work! yikes!), I had time to think about all the information we got and I have a hypothesis. Sure, it's the easiest thing to fix after "nothing," but I don't think that's because I want to ignore the problems. I have high hopes that we can turn this thing around before the exploratory procedure scheduled for the beginning of April, but it's based on facts and logic and my pediatrician thinks it really has merit (I would tell you what the gut doc thinks, but ha! like he's available for a phone conversation).
Why all this has me in such a tizzy is because it reeks so much of poor Josephine's gut problems (No, it's not oversupply like it was with Josephine. I wish it were, because I could fix that), and the experiences I had with the medical community at the time have left me with so little trust that I don't know what to do here. My kid is sick. The only place I can take her is to doctors, even though last time SO MANY doctors either brushed us off or gave us horrible information.
In fact, the very first doctor I saw, armed with a list of concerns with the strange things Josephine did when she ate, after she ate, and how she filled 20-25 diapers with diarrhea a day, she scoffed, "That's how babies are!" Three months later, when my mother-in-law found the diagnosis for us, I scanned the list of symptoms, and OH, Josephine exhibited all 25 of them, and OH, it turns out it's NOT normal for babies to choke the entire time they're nursing and have BLOODY DIARRHEA FOR TWO MONTHS, but thanks for your professional opinion, doc! I had given her a list of 25 symptoms, told I was being stupid, and so, of course, every other time I took her in about her poop problems, I never mentioned all the other stuff, assuming it was nothing and I was a stupid first-time mom, which meant I never gave the clues to any of the other doctors, who might have pieced it together much sooner. Yes, feeding problems and elimination problems are often linked. SHOCKER.
Then there was Josephine's gastroenterologist, who we first met in the hospital, scared to death and trusting him. He, however, seemed very uninterested in discovering what was actually wrong with Josephine. In the hospital, after spending two minutes with us, he told us it was a milk protein allergy. Simple. Do x, y, and z, and she will be fine. We did it. No change. When I followed up with him a month later, at my wits' end, he said, "Huh, looks like it's not a milk protein allergy after all, but I don't know what it is." Then he wrote ... get this ... "milk protein allergy" in the diagnosis line of her paperwork. When I inquired as to why he might write that, he said, "Oh, I have to write something in that line." (!)
Then, as he breezed out the door, he mentioned over his shoulder, "No need to schedule a follow up appointment. I don't need to see her again." (!!!!!!)
So, yeah, based on past experience I assume the worst, even though things might be okay. I'm trying really hard to just learn from the past and not repeat the mistakes I made with Josephine.
I must remember that my role as advocate for my child is crucial. I am her voice, and every decision I make must be in her best interest, not because I am afraid to speak up or ask more questions or have things explained more carefully.
I will speak up, I will speak up, I will speak up. I learned the hard way that medical professionals are not perfect, and I must know what is going on at all times. (Like the time a nurse, who had spent 45 minutes intubating Josephine, picked up a bottle of saline and was seconds from pouring it into her stomach, when I interjected, "Isn't she supposed to get the pedialyte?" "Oh yeah!" she laughed, "The bottle is exactly the same! Isn't that funny?" NO. No, it's not funny.)
Like I said, maybe this isn't a horrible horrible problem. Maybe it will be relatively easy to fix! La dee da da! Nothing to worry about here! Maybe it will be a long road. Who knows. But I need to get over myself and stop being so god damned scared, because my fear will not help my daughter. We'll fix her. We'll find a way.
World's best patient quietly reads a book on hour six of doctor-appointment day