Diagnostic No-Man’s Land

At my parents house, getting completely out of baseline! Still so sweet to each other, though!

Last weekend Mr. Charm had a poopy diaper that looked a little odd.  I couldn’t quite tell if it was mucous or blood.  Or both.  So, I pulled out our handy-dandy stool testing kit and put it to use.

Yup. Blood.

Nothing has ever caused Mr. Charm to have blood in his diapers except for dairy.  I know he ate 2 squares of baker’s chocolate at my parents house, but…that was well over a week ago.  Is he STILL so sensitive to dairy that he’s showing bloody stool, even so many days later? Or did he ingest something else bad that I don’t know about?

I don’t know.

I DON’T KNOW.

A week after returning home, and over a week since his last dose of ibuprofen with methyl cellulose (which the pharmacy assures me was NOT corn derived), Mr. Happy is still having reactions.

His poop still stinks like nasty buttered popcorn, though, it is smelling less bad by the day.  His eczema is still there, and it seems like he’s having reflux symptoms. Yesterday, the only way I could get him to stop screaming in pain long enough to nurse was to pile all three of us into a hot bathtub and let the warm water soothe him.  Even then, he started whimpering when we got out of the water.

I don’t know if it is his teething that is causing his reflux symptoms; I know he’s in pain – but is it from teething, reflux, or an FPIES reaction?  Is it the constant, prodigious amounts of drool he’s swallowing causing him to spit-up so frequently, or actual reflux? Is it the teething pain that is causing him to refuse to be out of our arms for more than an hour -total – per day, or is it not wanting to be horizontal because of reflux pain?

I don’t know.

I DON’T KNOW.

I’m sick to death of feeling so helpless in the face of my sons issues.  My fear at returning to work in June is starting to really effect me; I’m having nightmares about being at work and my children being rushed to the hospital and it taking me far too long to get back to them.  No one seems able and/or willing to help keep my children safe, or find answers to our urgent questions except me and the Geek.

Two years into being dairy and egg free, and at Thanksgiving our family sprayed a ‘specifically cooked special ham’ for Mr. Charm with a butter spray.  I know it’s complicated and hard to keep straight, but it still frustrates me when I have to – once again – outline what is unsafe for my kids to eat even after two years of dealing with this.

Doctors have been almost no help to us, thus far.

I do the best I can; I do better than my best.  I feel rotten about not spending as much “present and there” time with my kiddos, because almost every waking moment that I’m sitting still, I’m reading something about their illnesses on my phone.  I have to force myself to remember to spend active, quality time playing with and enjoying my kids, not because I’m trying to do laundry or sweep the floor, but because I’m trying to speed-cram an unofficial specialty doctors education into my brain so I can help keep them alive and well.

And still…I don’t know.

What do you do when you’ve entered a diagnostic no-man’s land?  Where there are no definitive answers?  Where you’re just making guesses about what is and what should be done? 

I. Don’t. Know.