If you've followed the last couple of weeks, you know I've been more than a little on edge. Aaron's pulmonary pressures, his pulmonary hypertension, have been acting up.
For those who don't know anything about pulmonary hypertension, there is only one cure. That's a lung transplant. Yeah, not in the cards for our little man. But as long as it can be controlled, it's okay. It's when it's not controlled that problems happen. And if there's a reason for it not to be happy, well, okay. We'll work with it. But when there's nothing we can point to, this mama ain't real happy.
Test-wise, everything has been looking okay. Clinically, not so much. Higher oxygen needs, inability to lie flat. But guess what else will cause an inability to lie flat? Something that I hadn't thought of, and is really hard to check with Aaron. Something that MANY babies and toddlers get. Something that hurts like the Dickens!! Ear infections.
|Okay, so this is his right ear. It was easier to get a picture of.
For those who are fortunate enough not to have had them, or at least not remember them, let me tell you, imagine a hot needle poking right through your eardrum. And yes, it's much worse when you lie down, or when you swallow (but Aaron eats through his tummy not his throat, so a non-issue). And just putting your head up a little bit relieves a lot of the pain. I have one daughter who has a tiny bit of scar tissue from ear tubes. When she gets an ear infection, even now, I'll hear her muttering, "rupture, rupture, rupture," because for her, when it does, it pops through the scar tissue and all the pain goes away.
But with Aaron, you can't see his ear drums unless he's taken to a procedure room. His ear canals are collapsed and tiny, and it's quite traumatic to try to see them unless he's put under. And he's a complex kiddo. With complex kids, when you hear hoof beats, you think zebra, not horse. It's like being at the Wild Animal Park. In his case, a zebra is just more likely, and if you guess "horse" and you're wrong, well, let's just say that very bad things can happen.
So how does this relate to what I've been seeing? Well, think about the last time you were in a lot of pain. I'm sure you were feeling great, taking long deep breaths and just enjoying how wonderful you felt. But most of us, we breathe a bit more shallow, we conserve energy, we just feel awful. And if you were plugged into a pulse/oxygen monitor like Aaron, you'd see it, just like we do with him.
So here's what I'm hoping, praying for. I'm hoping that it's just the manifestation of an ear infection. I'm hoping that now that we have drainage and I'm treating it, he returns to normal. He has done a little better the last couple days, so here goes. Wish us luck and keep us in your prayers. Pray that all those little bones work well together.
-- One hand washes the other.”