It’s funny when you think about it, really. After seeing nine doctors and having somewhere close to 30 separate appointments over the past 4 months, doctor #10 (the GI specialist that we lucked out getting to see thanks to a cancellation) takes about 2 seconds to poke around Parker’s stomach and says to me:
“Has anyone ever mentioned that he has an enlarged spleen?”
My jaw dropped. Absolutely dropped. Enlarged SPLEEN? How could NINE other doctors miss something like that? And I specifically remember each and everyone one of them poking around his stomach.
Seriously, that just set in stone my thought that doctors are idiots. Period.
What does an enlarged spleen mean, exactly? No idea. And I don’t want to delve into the mystical land of google and totally freak myself out about it, because the doctor said it could very well be nothing more than how Parker breathes, and if he pulls too hard it could cause his spleen to be in a higher than average position.
With all the other symptoms though? He doesn’t think it’s just how Parker is breathing.
He spent a very long time getting every minute detail, actually asking questions that seemed like they would HELP him and not just random out there useless BS questions the other doctors asked (if they asked any at all).. he actually listened to me. Didn’t just hear me, but listened. There is a big difference.
He says “Well i’m glad your doctors finally sent you here, it’s definitely a GI problem” and I honestly had to laugh and tell him that NO, the doctors did NOT send us there. In fact, every single one insisted it was NOT a GI problem and said not to waste our time. I told him we didn’t trust anyone we had seen so far and took the liberty of making the appointment ourselves.
I’m giving him the benefit of the doubt here, in that I think he would have cared regardless- but I definitely don’t think it hurt the situation that Parker has LOST weight yet again. He weighs less than he did a month ago. I was shocked. Even with the hunger strike I could have sworn he was still gaining weight. He may not eat much at a time but I make sure to feed him more often so that he is getting pretty much the bottom of the average amount for his age and weight. That apparently is not enough.
This is the first doctor of all the ones we’ve seen that I felt not only confident in, but comforted in. I even said “So i’m not crazy? There’s something wrong?” and he said “You are definitely not crazy, and we’re going to figure this out.” Not ONE other doctor ever told me they were going to figure it out, regardless of how much testing and trying things that it took.
The one thing that completely baffled him is Parker’s tongue. It’s still black. And although the pediatrician told us it would just go away on its own because they assumed it was just some random bacteria- this doctor, who looks specifically into kids mouths and stomachs all the time admitted he had never seen anything like it before. It’s not hairy tongue like we were told. If you’ve ever seen a Chow’s tongue, that’s what Parker’s looks like. He said he would have to dive into his books to try and figure that one out.
There’s just so much going on with the poor kid it’s hard to narrow it down.. which is why he had about 10 blood tests today. They are testing everything under the sun to figure this out. FINALLY. And he has an ultrasound in two weeks to look at his spleen.
As far as the pulmonologist? He sort of rolled his eyes about her, too. He totally disagreed with the Cystic Fibrosis test we had to have done (“Don’t even get me started. That’s a whole other argument there”), but he said Parker’s dosage of prilosec absolutely did NOT need to be messed with. The medicine is doing it’s job. And while it COULD be a reflux problem, it’s not a problem that prilosec could ever help with other than relieving the pain.
So he’s sending her a note before our appointment with her tomorrow. I’m sure it doesn’t call her a moron or anything, but I sure hope he tells her how wrong she is and to STOP messing with his dosage because it is not her area of expertise to do so.
He didn’t want to speculate on what exactly could be wrong until we got some test results back because there are SO many different things it could be.
So now we wait. He said the blood tests shouldn’t take long and he’ll call us with the results as soon as he gets them. I hate waiting and wondering. Have done so much of that already, and meanwhile, Parker is probably not going to get any better and could possibly lose even more weight.
At least now there seems to be a light at the end of this 4 month long tunnel. A better outlook than we had yesterday.
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