We're still waiting on the biopsy results from the last upper endoscopy but as I mentioned, the scoping doctor already crushed any lingering hope we might have had that Roo's improved. So, I've been sitting here stewing for the past week trying to wrap my head around the idea that this EoE crap isn't something he's going to simply outgrow. The allergies continue to increase with no signs of outgrowing anything. I'm preparing myself for the placement of a g-tube. I've joined a couple of online support groups for families dealing with eosinophilic disorders. I'm thinking about how the rest of us will continue to take meals when Roo is the pariah with the tube. I've put all our air travel plans on hold until the little kids are in college.
Before this latest scope, Roo was doing better. Really better. He was eating enthusiastically, trying new foods, gaining weight for crying out loud. He was happy, enjoying school, running around like the crazy 2-year-old he's supposed to be. Then, all it takes is one scope where some doctor we've never seen before in our lives tells us that he has made absolutely no improvement and we are worse off than when we started. Now Roo's suddenly acting uncomfortable and grasping his throat when he eats. He's vomiting again. He still has the remnants of the croupy cough he developed from the breathing tube. He's waking up several times at night. We've increased his allergy suspect list to include:
(in addition to dairy, egg, peanuts, tree nuts, apple, peach, and beef of course)
I'm spending countless hours re-imagining our lives as a family - no unnecessary travel, few - if any restaurant meals, limited play dates, private school (home school?) since I can't trust the public school (or maybe ANY school) to provide a safe eating environment for him let alone prepare food he can actually eat. And it sucks. We sit and wallow and wait for the next shoe to drop because while I thought we'd lost our best pair months ago, it looks like we're dealing with a centipede.
The more we sit at the hospital doing tests, the more research I do, the more EoE families I talk to, the worse Roo's symptoms seem to become. This cannot all be in my head. Every time he takes a small step forward someone comes out of the woodwork to take it away and push him back down and I'm so tired of it. I know it's a long road but we've been at this for over 18 months now. He has earned the right to some forward progress.
Yes, it may be a bit flaky even for me but I'm totally buying into the Law of Attraction here. If you're unfamiliar, the Law of Attraction is this metaphysical, unsubstantiated, Oprah-endorsed theory that basically rests on the belief that like attracts like. If you have positive, happy, healthy thoughts then positive, happy, healthy things will come to you. On the contrary, when you sit in the doctor's office attached to a bunch of tubes and wires being told how unbelievably sick you are day after day, you're likely to feel sicker.
Our biopsy phone call should come today or tomorrow.