Gastroenterologist visit went ok. He ordered blood work and a stool sample. He started Susannah on Zantac in case she has hidden reflux that might be making her not want to eat very much. Said it would take two weeks to start working and maybe act as an appetite stimulant. He also prescribed PediaSure 1.5, which is a prescription PediaSure that has more calories than what you buy on the shelf. After three days of giving her both, she decreased her eating, so I got permission to stop the Zantac. She still refused to eat, so I quit the PediaSure, got her on milk and then back to her regular formula. After she started eating well for several days I started the Zantac back and she's been on it three weeks now and has shown no signs of an increased appetite, so when we go back I'm going to ask to stop it altogether. She has never shown any signs whatsoever of reflux and her formula is a sensitive kind anyways, so I seriously doubt she has any problems in that area. Her appetite isn't bad, she just doesn't intake enough calories to compensate for her heart condition. She does eat and she eats fine. She has started to show more interest in what we are eating and is starting to prefer solids to milk, which is normal development around a year old. She WILL NOT take the Pediasure at all. We've tried mixing it to various degrees and she won't have anything to do with it! I'm hoping he says we don't have to come back. I don't feel like he really listened to us. We told him how much she drinks a day and he prescribed well over that amount and we also told him that she doesn't really like sweet stuff, and the PediaSure tastes like vanilla milkshake flavor (yes, I tasted it). We weren't really surprised that she quit drinking it, but we were hoping she would tolerate it just for the extra calories.
Cardiologist visit last week went well. He is so relieved that someone else is watching her weight. She gained 5 ounces from the previous visit and if she gains between now and Sept. we won't have to go back to him for 3-4 months. Nothing has changed on her Echo's since a few weeks after her surgery in Jan., so I think she's fairly stable for now. We're just waiting for her to grow more so the band can do its thing and we can have the Double Switch done. I asked about a time table and he talked like it would be 1-2 years based on her slow growth. Of course, there is no absolute way they can come up with a time frame, it's pure guess at this point. He asked if she tires out while playing, which would be a sign that she might need a pacemaker, but as far as I can tell she does fine. With her personality, I'm not sure I would be able to tell at this age if she's tired or not from playing or if she's just playing in a different way. The plan was to wait for the Double Switch and put a pacemaker in then, but since it keeps getting pushed further out, she might need it before her big surgery.
Praying that she'll continue to gain and grow, that she'll continue to be stable and that her tricuspid valve leakage won't get worse, and that I'll be able to clearly notice symptoms of her needing a pacemaker if/when it comes to that.
This is a link to a video of a little boy that has CCTGA and got the Double Switch surgery done. The first three minutes does an excellent job of explaining and diagramming what the surgery will be, and what a CCTGA heart looks like next to a normal heart.
http://www.youtube.com/watch?v=Ur05mwMn8FA&feature=youtu.be
No comments:
Post a Comment