Sometimes I feel like Andi Bean is a science experiment. The constant poking, prodding, trying this, switching to that... I know she is tricky and keeps throwing curve balls, but, for the love of the bean already! The fever broke yesterday before the first dose of antibiotic was given via IV. Just in case it is pneumonia though, we're going to run the antibiotic for a few days and see how she does. She gets her daily blood tests and chest x-rays are every few days. Yesterday's x-ray was worse than the day before. However, she seemed better yesterday. Seems even better today. She sleeps. Earlier today, she was smiling at me. It was the most incredible thing. I tried to get it on camera, but not quite sure if I caught it. She hasn't had much to smile about, so, I was amazed to see that she felt otherwise.
The Attending reiterated that the goal is to get Andi as big and strong as possible, getting her ready for surgery. Feedings are an issue. They increase the calories, her stomach revolts. They increase the volume, her stomach revolts. She's on continuous feeds and they don't want to mess with the current volume, speed, nor content. She's had some reflux vomiting and some leakage out of her G-Tube, and that makes it difficult to tell if she's getting enough. At 3 months old, she's put on less than 3 lbs., mainly because it's like she's on the stair master in the gym, all day long. In order to help her with the reflux, the g-tube leakage, and make sure they get in as many calories as they can, and help minimize loss, they want to put in a NJ Tube. A NJ Tube is a tube that goes up her nose and down past her stomach into the intestine. The nurse who has her today revealed that she does them often, and other nurses usually ask her to do them, as she has the touch. When I returned from a break, I learned that she tried and could not get the tube up either side of Andi's nose. Therefore, the ENT resident is going to do it. She just sprayed some junk in Andi's nose and is going to come back soon, spray some more and try to get a smaller tube up there. During her heart surgery, ENT is going to scope her nose while she's under sedation and check out how her choanal atresia repair looks. See if they need to clear out any scar tissue.
I understand why they do everything they do to this baby girl. They explain everything in great detail, encourage me to ask questions, and all that... However, medicine is science. It is not exact. It is not easy. This is a teaching hospital. And their motto is 'Where Healing, Teaching and Discovery come together.' In our case, I'd prefer a lot more healing and a lot less discovery. I just have this unrealistic vision of Bob Barker strolling out from behind a curtain with a magic wand and with one wave of his hand, and of course a plug for animal rights, and voila! the Bean would be magically healed. That'd be a lot more fun than the different variations of "we'll see", "it' depends!" and "it's up to her" I hear repeatedly.
The NG (naso-gastric) tube can really help, Anna. It bypasses the gag reflex and the food can go down in small, digestible doses. I'll bet if makes a big difference. REALLY glad her fever is down. I hope she gets to be a big fatty soon.
ReplyDeleteWow! I just read about the NJ tube. Gross and awesome all at once!
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