Mike took the boys to church this morning and I am home with Kaidence. I was hoping to get in a quick shower but she started throwing up mucous and bile (or nystatin, they are about the same color) this morning. She has a little cold and I started noticing more secretions from her when suctioning around Tues. or Wed. It seems to be a bigger issue in the morning after she has slept all night long on her back. The first thing I do every morning is suction her and try to clean her out really well. I noticed her gagging a lot this morning when giving her a binky or anything else. I am hoping that it is not because she is not swallowing her applesauce and food well. She seems to clear it well and if something goes wrong she coughs it up. Although, if that were the case I think we would have problems much sooner instead of 12 hours later. She seems to tolerate the feeds very well when eating and she usually has her last "meal" around 6 pm we then keep her upright for awhile and she goes to bed around 7 pm for the night. She hasn't had anything this morning to eat. I am holding all of her "big girl feeds" for the day. She seems pretty tired this morning, in fact she is asleep in bed again. We will keep watching her. I am wondering if her cyclosporine levels are off. They had to adjust the dose on Thursday and then with her pulling out the feeding tube yesterday and having to recoat the inside of the tube with more medication, levels could be off a bit. FYI- cyclosporine binds to plastic and is absorbed. Therefore we have to coat the NJ tube with the medication and let it sit for 30 minutes and then rinse it before placing the new one. Otherwise the regular amount that we would normally give her would all be absorbed in the tube and none would be left for her body. Hopefully we have no more vomiting incidents or else you know where we will be going. We love our friends there but only want to visit. I will watch her very carefully and not take any chances. It's not worth it. Tomorrow Kaidence has a cardiology appointment and we will get her levels rechecked. We also apparently have another press conference with the hospital and doctors to tell the second part of Kaidence's story and how the Berlin helped her get healthy enough to be ready for her new heart. I am assuming it will be on the news tomorrow sometime, but I don't know for sure. Gotta go, my battery is low. Thanks for all you do for us and for reading Kaidence's blog so faithfully.
6 hours ago