Baby Katie Not Feeling Well

Katie has not been feeling herself here lately. We called the hospital Monday evening and talked to the oncall physician about her symptoms - grunty breathing, nasil flaring, extreme gagginess (yes even more than is normal for her), lots of poopie diapers (7), rectal temp 99.9 (over 101 is bad so this was ok. Her oxygen was still 90% and heart rate was 174, which is slightly high for her but not unusual. The doc said to watch her breathing overnight and call back in the morning. So, Tuesday morning we called again. Her breathing was more normal, but still had a lot of watery poopie diapers and her temp was 100.4 at 8am. Her nurse practioner, Kari, was concerned about all the diapers and her losing too much fluids so she told me to call the pediatrician and to also hold her evening lasix dose. We made a 130pm appointment with the pedicatrician. I took her temperature again at 10:45am and this time it was 102, which worried me a lot, so I called the doctor back to see how much tylenol I could give her for her fever. I gave her the dose, but her temp was still 102.4 at noon when we left for the doctor. At the pediatrician, he checked her ears, mouth, urine, etc. and could not find anything obviously wrong with her so he told us to go over to the hospital (Piedmont) to get a blood culture and CBC (or CDC sounded like). We went to the lab and spent about 2 hours there for nothing. They stuck her in one arm and of course couldn't get a vein. So they called the NICU to get a nurse to come stick her, but they were really backed up so one never came. So he tried her other arm to no avail. He said only the nurses could stick the feet/head (which are the only places anyone has ever been able to get a vein on her) so they sent us back to the pediatrician with no labs taken. I took her temperature again at 330pm and it was 100.8 so this was somewhat reassuring. At the pediatricians, Dr. Copple gave her a shot of Rocephin, an antibiotic, and asked us to come back in the morning. So, we have a 1020am appointment with him this morning. I gave her another dose of Tylenol at 5pm right after we left the pediatrician. Her temp was back up to 102.4 by 830pm so put a cool cloth on her belly for about 10 min and called the doctor again. This time I spoke to her cardiologist who said what we were doing was fine and to go ahead and give her the 10pm dose of Tylenol. After application of the cool cloth her temp was back down to 100.9 but was 101 right before her Tylenol at 10pm. I checked it again throughout the night - at 1130pm it was 99.2 (normal range), 94.3 at 3am (kind of low and her arms/legs were really cold so we put more clothes on her and did not give the 3am dose of Tylenol), 98.4 at 4:30am (normal), 101.3 at 6am (gave another dose of Tylenol). This brings us pretty much up to current time. She is still struggling with a lot of poopie diapers so I am holding her morning lasix dose until after I talk to one of the doctors. I also noticed this morning that her hands and feet are taking 6+ seconds to perfuse which is a really long time so I am concerned about her blood pressure but have no way to check it until we get to the pediatrician. She still gets pretty fussy when she has a diaper or when I have to pick her up/mess with her, which is much better than her being lethargic and just letting me do whatever. I apologize that this post is so clinical but I know ya'll will want to know what is going on and am not sure if I will be able to post again until this evening or tomorrow. We have the 1020am appt. with the pediatrician, then 2pm appt. with the GI specialist and the dietician this afternoon. We are also supposed to go by the cardiologist while we are at the hospital because he definitely wants her bloodwork done and said that since they couldn't get it at Piedmont, he would make sure it got done at CMC (which I prefer anyways). Please be in prayer for Katie, so that they find out what is wrong and get her feeling back to herself again. I will post an update as soon as I am able.