Friday morning we took Asher to the hospital for an upper GI scan. It was awful. I knew it wasn't going to be fun, but I also didn't know it would be so terrible either. Tomato referred to it as being a "benign" test to rule out abnormalities, which we wanted, just to be sure. The test consists of the patient drinking barium DURING a series of x-rays... the radiologist has to get dozens of x-rays from multiple angles, so that in itself takes 15-20 minutes. The problem was that for this test to be administered, the patient has to drink a barium solution on demand... um, yeah, Asher refuses ALL feedings EVERY time, due to an aversion to eating caused by the pain he's been having. That's why we were getting the test in the first place, so I told the nurse right off that it wasn't going to work. I read that if kids don't/won't drink it, they can use a dropper/syringe to get the fluid in them. The nurse assured me it would be fine and said there are "other ways" to do it if they won't drink it.
So, we were waiting in the x-ray room with the nurse and a student for at least 15 minutes before the radiologist arrived. Another visiting doctor from Children's Memorial working in the CDH clinic... he was apparently a "pediatric" radiologist, although there was definitely no sign of that. He was pretty cold and a little abrasive, and seemed irritated most of the time. They told us to lay Asher (who was stripped down to a diaper with a tiny hospital gown on) on the x-ray table on his left side, so I did. Both nurses proceeded to pin him down, and then the radiologist positioned the x-ray machine (overhead) directly over Asher, all the way down on him so it was hovering about 1 inch from his body/face. Of course he's screaming at this point, and they then instruct me to feed him the nasty barium. Yeah. OK. Good one. So, I try to feed him the disgusting bottle, while he's being restrained and smashed under and x-ray machine. Mind you, he won't take a bottle of formula when he's in our arms being rocked. Surprise surprise, he refused the bottle and proceeded to scream and thrash. The doctor got annoyed and since he had to x-ray him while he was drinking it (not after), they had to employ one of the "other ways". They then shoved a tube up his nose that went down his throat all the way into his stomach. At this point he's screaming like he's on fire, that pathetic wail at the top of his lungs, screaming with all of his might for someone to save him. We just had to stand back and watch. The doctor intermittently pumped barium into his stomach through the tube and the nurses kept repositioning him to get the angles the doctor needed. 15-20 minutes later, they were done. To say it was awful again would be a ridiculous understatement. I'm sure it's not comfortable to have that tube rammed in your nose, down your throat, in to your stomach when you know what's going on, but when you don't understand what's happening, I can imagine it's terrifying. I just stood there and cried the whole time. As soon as the nurse handed Asher to me he immediately stopped crying, gasped for air, and looked at me with tear-filled sad little eyes as if to say, "why did you let them do that?? Am I safe now?" It was absolutely heart-breaking.
The less than friendly pediatric radiologist decided not to do all the scans Tomato requested, as he said they were all unnecessary. He did tell us that everything looked "good" and that he did not see any anatomical abnormalities (specifically hernia or malformation). So, I guess that's good. Those aren't official results, and we still have to wait for Tomato to interpret them, but I trust the mean old-man radiologist more than I trust Tomato's interpretation. It seems that the rule-out did just that, ruled major anatomy issues out. It's good, it's good that he probably doesn't have anatomical abnormalities causing the reflux and pain, but again, it doesn't really help either. It doesn't give us any more direction, and it doesn't clear anything up in regards to the cause of his pain. He did not reflux during the test, but that doesn't mean much, only that he didn't reflux the nasty barium. I immediately felt guilty for putting the poor little pumpkin through yet another round of traumatizing events, only to find NO answers. I'm overwhelmed by guilt, helplessness, and hopelessness these days. It feels like at this point we still have no clear direction, but what is worse, we seem to have exhausted just about every avenue we can, and still, NOTHING.
We had to bring Asher to the hospital hungry, as you aren't allowed to feed them before the test (with the hopes that starving them will make them desperate enough to drink the barium). So, after the procedure when we were waiting around in the x-ray room, Asher took 1oz from a bottle that we offered to him, because he was that hungry. He has to be desperately starved to willingly take a bottle when he's awake. He only fussed for a fairly short amount of time for bottles throughout that day, and slept very well with his naps (being held all of the time, of course), I think because he was SO worn out from all of the trauma of the dumb test. Yesterday, however, he decided that he didn't need to sleep at all, and napped for only a few minutes at a time the entire day. He was visited by Mimi, Gigi, and Grandpa yesterday, and he seemed to be in a strangely good mood for most of the day which is abnormal, but as soon as his visitors left, he had a meltdown and proceeded to scream for HOURS on end. He's also been throwing up a good portion of what he's eating along with having long stretches of inconsolable screaming. Having a good day or a good afternoon seems like nothing to write home about since he's back to being miserable hours later. People keep saying that maybe he's turning a corner, maybe this is the worst of it, maybe he's improving, but unfortunately I'm not able to believe any of that, because none of it proves to be true.
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