hktotx

Hi, Thanks for the replies everyone. Trach posted this question for me as we were still in ICU and no time to get online. My daughter was admitted to ICU with a central line infection, and was presenting with high heart rate, low bp, extreme tremulousness and high fever, as well as the extreme nausea, headaches and swelling pain she has been dealing with for weeks. Unfortunately, the hospital protocol is oral or axillary (under arm), and neither of these have ever been a consistently accurate for her. Given the state of her health over the last couple of years, we do "vitals" almost daily, and have a very good idea of her baseline temp, via tympanic (Ear). (We are also careful to take it properly straightening the ear canal and making sure it is placed in the ear properly). A couple of times a week, we will take oral as well, and it correlates (with proper adjustment to scale), most of the time when no fever is present. However, when she starts to present with fever (and its symptoms), oral never seems to capture the fever for her. So, we have a temp history for her based on ear. When she went into the ER last week, it was obvious, without any type of temp check, that she was having fever (very hot to touch, flushed, hot/cold, aches). We knew she was as well, because, instead of her usual 99.1-99.3 baseline, she was 103.6. But, oral in ER showed 98.7. One look at her, and one touch to her face, and that was obviously wrong, but they chose not to go with our ear reading, and instead to go with no fever per oral. Due to the high heart rate (145-150) and the low bp, and the positive culture from her line, they started IV fluids to bring the heart rate down. One hour and 2L later, though quite swollen, her heart rate was still soaring and she was burning up. They showed a temp of 99.7, we showed 104.3. She was a far cry from 99.7.By this point, she was in septic shock, and they had to transfer her to the main campus of the hospital via ambulance. Upon arrival at main campus, she was burning up. Again, they chose to go with oral, and showed she was 98.7. Ear showed 103.5. Five minutes later, they moved her to ICU, the nurse took one look at her and said there's no way she's 98.7. We once again explained that the most accurate read on her temp is via tympanic, but due to protocol, they couldn't use it. They did immediately take it via axillary and got 103.3.That helped. But axillary turned out to be accurate about 50% of time as well. We've since learned that axillary can lag behind core temp by up to three hours. What we are trying to understand is this - is there a correlation between autonomic issues and accurate ways to measure body temps for those with Dysautonomia? I know we are all different, but wondering if anyone has run into this. My sister and I also both have Dys / POTS, and our ear temp has always been more accurate than oral, if we do nothing more than compare it to the symptoms we are having. Axillary is not consistent for us either. We have since found an article from the NIH that discusses the accuracy of temp taking methods, and favors rectal as the gold standard, but tympanic as the next most accurate, if taken properly. Axillary is considered the least reliable. We are still in-patient, and she has finally beat the infection, after they removed the line. Her fever is gone, and we are left with the extreme nausea that she has been plagued with for months, since having a colonic motility study done. We hope to see surgery for a new central line today or tomorrow, and go home soon to work with all the other symptoms from home. Thanks again for all of your help!