rotten day

So Tate's Upper GI with small bowel follow-through was today. As far as I was concerned, this seemed like it would be the easiest test so far. Well, let me just say, I was so wrong. 


I look back at the beginning of all this junk with the random vomiting and terrible upset tummy issues for Tate, and it makes me sad for him. Just when he was getting used to his prosthetic eye, and I've said many times that he's happier than he's ever been since he had his eye removed, this mess starts. Sorry, I'm having a total pity party today, and it's probably a party you didn't want to be invited to. But yet, here you are. So anyway, we started with the CT scan... after being up vomiting since 4am that morning, then driving an hour to spend 4 hours at an appointment getting his prosthetic eye adjusted (in other words, getting poked and prodded), he had to come home just to head straight to the hospital and have an IV put in to have his CT scan done. He was tired, cranky, and didn't feel well, and it was the last thing he wanted to do, and he showed that by having a complete meltdown the minute he saw the IV needle. But we made it through. Then came the gastric emptying study... on that day, he woke up at 5am, vomited for 4 hours (dry heaving at the end since there was nothing left in his stomach), then was at the hospital for 5 hours for the study. The toughest part about that day was having to make him eat the radioactive eggs, and feeling bad for him cause he was, again, tired, cranky, and not feeling well. So when I didn't wake up til my alarm went off this morning, instead of waking up to Tate vomiting on my bed or in the hallway, I thought we were off to a good start. We got ready, headed to the hospital, but not before I put a request on my facebook page that my friends pray that I didn't have trouble getting him to drink the barium, because I knew how stubborn he could be. (He's my kid). 


We got to the hospital for our 915am appointment. We entertained ourselves with my Galaxy Tablet while we waited for an hour to be called back. The doctors were confirming with our Pediatric GI doctor that the plan would include the small bowel follow-through, because apparently, that takes a lot longer, and they don't usually do that unless there's a specific reason. So after it was confirmed that we needed the whole thing, they gave me the cup of barium and got Tate up on the table. They offered him a flavor, and he, of course, chose the chocolate over the strawberry. (He really is my kid). 


That's when the tough part started. He was hungry since he had been fasting since last night, so he was anxious to drink the "shake". As soon as he tasted it, he made a face and pulled away. I know how stubborn he can be (again, totally my kid), so I reminded him about our earlier conversation that he would have to drink the stuff so they could do his test, then I would buy him a cool prize. Bribery usually works really well for him (once again, definitely my kid). So he agreed to try again to drink it... he took a good sip, then the face came back. The doctor then told me he had to drink the whole cup... it's the typical styrofoam cup, I'm guessing 8 ounces or so. I knew then that it would never happen at this rate. So the doctor starts telling him that he has to drink it or they're going to have to put a tube down his throat to get the barium in his belly. I encouraged him to try to drink big sips to avoid this, held his nose for him, and away he went. He took a big drink, then proceeded to gag and vomit. I wiped his face, gave him a break for a minute and just talked to him, then had him try again. Big drink, gag, vomit. This happened 4 times in a row before the doctor talked to Tate about putting a tube in, explaining that then he wouldn't have to drink anymore. He agreed, then the doctor talked me off the ledge explained it to me. I wasn't excited about this, but she assured me that they did tubes often and he would be fine. She asked me a couple of times if I was comfortable with it, and I told her I trusted her instincts. 


So before they can do the tube, she gets a lidocaine gel and puts it in a syringe, shoots some in his nose, and has him sniff to numb his nose and passageways. He wasn't a big fan of this, and the doctor said it does sting quite a bit, but he did great. That's when she tried to start the tube. I say tried, because as soon as he realized what she was doing, he started struggling. I held his arms and spoke to him softly, attempting to calm him, bribe him more, whatever it took. He was screaming that it hurt and burned. I noticed that the tube didn't seem like it had gone very far in... that's when she said the tube got caught up and "hadn't made the turn" and that it was probably pretty painful. They finally pulled that one out, and I felt terrible when I saw blood on it. It didn't really surprise me, considering where it had been, and that it got stuck, but it made me so sad for him. At this point, he was crying and screaming that he just wanted to be done and go home. So did I. 


Then came the new tube. It looked like it was the same size, but what do I know? I was talking to Tate, and the doctors were trying to take a look at his insides with the big machine to see if they could see anything from what he had swallowed by mouth. It wasn't near enough, and during this time, I had gotten Tate to calm down quite a bit. He was still crying, but much quieter at this point. He had actually folded his hands behind his head. The doctor motioned for me to hold his hands where they were so she could try again with the tube. So I held his hands, then he saw the tube coming toward his face. At this point, he started screaming and crying again. He began to roll his head back and forth as fast and fiercely as he could to try to avoid the tube. I had to hold his hands with one hand and try to pin his head still with my other hand and arm. He looked so distraught. It was awful. I finally got his head still enough that she was able to get the tube started, and thankfully, this one went right down. They taped it to his face, and began to pump the barium through with a syringe. That's when I pretty much lost it. He was crying the whole time they were pumping in the barium... he just kept saying "Please take it out, please take it out!" It really broke my heart. I started crying with him (but I was kind enough to leave out the screaming). I pretty much cried with him til they were done. I usually hold it together pretty well for his tests, procedures... heck, I even did better than that for his eye removal surgery. But for all of you who have kids who have had health issues, you know how emotionally draining (and emotionally devastating) it can be to see them suffering. I just hope that today was the last test for a long time. It just sucks. 


Overall, our appointment that I was originally told would be 45 minutes turned into almost 4 hours. (After all, it took an hour just to be called in). As far as the test results, the only new news is that he also has reflux. Reflux is rotten enough, but apparently when the gastroparesis set in, it made the reflux a lot worse. She gave me some tips to help relieve the discomfort from the reflux, and I expect they'll put him back on the Nexium and maybe try the erythromycin again to see if the rash comes back. 


Tate ended up with a green Nano bug (his original prize request) and a Jack Russell Webkinz (the extra prize I offered him because I felt guilty). He's back to being himself, and this morning already feels like more of a memory than one of the toughest days we've had yet. 


So after my sob story pity party post, if you want to laugh, check out Patrice's newest post. The boys think they're famous now. :)