Monday, April 6
Well, technically it's Tuesday now. I'm sorry for not posting more updates. This has all been much more difficult and time consuming than I anticipated! Faith's med schedule isn't as condensed now as it was when we left Denver, so she has meds a lot more often, 7 different times throughout the day. And then I have to take her off the Omegaven in the morning, and then off the TPN in the afternoon, and then mix and hook up the TPN and Omegaven at night (and that's not working out as easily as it was at home, either!). Throw in some pumping (not nearly as much as I should), a shower, and maybe one or two meals, and there's not a whole lot of time left!
Faith had an upper endoscopy on Wednesday, trip #7 to the OR. I almost wonder if the surgical nurses think it's weird that I'm not nervous before she goes to the OR anymore... The doctor also placed a manometry catheter to do that test on Thursday. Dr. Rodriguez, the GI who did the endoscopy, said that visually everything looks normal. There wasn't any visual damage to her esophagus from her reflux, which is good. He did say her pylorus (the opening from her stomach to her intestine) is a little tilted or something, but he didn't think that was something that should be causing her issues. They took some biopsies, I haven't heard anything yet about how those looked.
Thursday's manometry test was a measure in patience. Well, really all week was, as every day when I woke up, I heard something different about when we'd be getting out... it seemed like every day they said it would be that day, and then an hour later they'd tell me it would be the next day. But anyway, Thursday morning they started the test at 6:30. I stayed at Devon Nicole the night before (I started staying there Tuesday night, since I had no real idea when we'd be discharged, and figured it would be better to get the room set up- and CLEAN- before taking Faith there), so I had to get up really early to be there. When I got there, she was hooked up to the machine and it was running, but there was no one in the room. The end of the catheter down her nose looked like an octopus, with 8 tubes coming together into the one that went into her. The 8 tubes were hooked up to this machine, and the machine had a computer screen with 8 lines on it. Each line corresponded to a different place in her digestive tract. No one was there to tell me which lines were what, but I figured it out anyway. For the most part, the lines were pretty straight, but then she would swallow, and the first three lines would have some action: first the top line, then the second one, and then the third. I figured that was probably good. The other 5 lines stayed flat. I figured that was probably bad. Then later, Dr. Rodriguez came in and explained it all to me. I was right about the first 3 lines, and I was right in my assumption that it was bad for the other lines to be flat. There was water running into the catheter, and that's how it measured what was happening. He explained that they would also feed her and give her some motility meds, Erythromycin and Octreotide, while the catheter was still in, to see what would happen. I spoke up then and said if they fed her without giving her motility meds first, she would throw up, and they would probably lose their catheter... After I said the same thing to three different people, they finally listened to me, and decided to do the meds before feeding her. (I have seen her vomit up way too many NJ tubes to believe that she wouldn't do the same with a manometry catheter!) They gave her some IV Erythromycin, and we started to see a little action in her intestine (it was an antro-duodenal manometry test). Then she threw up three times. By that point, the test had put as much volume of water into her as she normally takes in a day in feeds. Next, they gave her a shot of Octreotide. I had heard of it being used as motility, but never really looked at it more closely... but I remembered it from when Faith was on it for her chylothorax. The Octreotide didn't seem to do that much for her. Next they fed her. A little action in the intestine... then it was time for her regular Erythromycin dose. That was interesting. I watched the monitor closely, anxious to see if this drug we're giving her actually does anything. Sure enough, about 10 minutes after we gave it to her, there was a little action in the intestine! You may notice I never mentioned any action in her stomach... that's because there was none, other than when she threw up. This means she has a new diagnosis- gastroparesis. If you read about it, it makes some things make a lot more sense, like why when she was eating, it was hard to get her to keep eating and get to the amounts they wanted her to be taking because she acted full, and why when she did throw up, it was never right after a feeding, but actually was usually just a little bit before a feeding. I honestly have NO idea how she can eat to her stomach when it's not working...
Well, I am falling asleep since it's 2 AM. I will post the rest of the update later!
5 weeks ago