Elias has had a particularly rough few days. At first we thought it was because he has four new teeth coming in again, but it appears to be much more than that. The problem is what? He has fluctuated low grade rising fevers that peaked late yesterday afternoon at 99.7 he has since dropped but it elevated again. Two nights ago, our new night nurse woke us at 3am because Elias was having difficulty breathing. The jury is still out on the new nurse, but I’m not going into that right now. It isn’t fair to evaluate him while Elias his having these complexities that has us scratch our heads. Hopefully we can get into the clinic today and get some answers. We changed the vent circuit (tubing) in the middle of the night last night because we noticed a foul smell blowing out from the point it would connect to Elias and was dry, it should be moist. Bacteria maybe? In the hospital the circuits are changed once a week at home it is one a month! This is the first time this has happened but we are afraid there may be a tracheal infection of some sort now, but the other tell-tale signs are not there for that. if we do not get into clinic we will likely end up in the ER, and that will 9 out 10 times end up in admission. The funny thing is from 8-10 last night Elias was feeling better or it seemed, he was playing laughing smiling. About 20 minutes after he fell asleep and was on the vent the craziness began again.
We have watched, analyzed, discussed and pieced together all the changes, patterns and behaviors with symptoms. We have thoughts on what the docs are going to tell us, but there are so many varied symptoms that don’t go together even it confuses the issue, ad that is not to say he can’t have multiple issues at one. His stool is loose again, so it could be the C-diff still, but he is on the medication for that and a very strong one at that. He has been on that med for nearly two weeks without issue so we doubt it is that. He is retching a lot, which again goes with either c-diff or urinary tract infection. Then there is the vent issue. The fevers which Elias only has historically when there is a MAJOR issue, especially a 99.7 His G-tube is also leaking like crazy. At one point we even began to wonder if he was not tolerating his feeds, but the issues can begin during rest, so not likely. We did all the normal checks and trouble shoots for the G-tube and it is all inline. The only “new” things that were present when these began was we started a new bottle of Prevacid, but we are told the likelihood it is bad is slim and the nurse started. Typical, but at the same time a touch more worrisome based on what we are seeing. We will keep you posted on things as we know more. Thank for the thoughts and prayers, we do not want to be back in the hospital.