The Puddles

We are on day 14 of Ben having a fever. He has been running a fever every evening of 101. Until yesterday. 

When we arrived at the ER he was running 102.5, so that eventually got him admitted to a regular room. We finally got settled in his room around 2am. They put him on Vancomycin and Zosyn via IV. They are broad spectrum antibiotics to cover all of the bad bugs that could be causing this while they wait for some of the cultures to come back. So the poor boy was woken up all night while they changed out his meds, flushed his lines, checked his vitals, etc. It has been a long night. Around 5am, he started running a fever again of 102.8. So him getting a second fever after Tylenol is a new symptom. 

This morning we have met with three teams of doctors. Infectious disease, cardiology, and Dr. Fraser’s surgical team.  Each one has said, “Ben is a puzzle and is really making us think. We don’t know what is wrong with him but clearly something is wrong. So we are going to work hard to figure him out.”

Nothing obvious or the typical bad bugs (like Mersa) is coming up positive so that is a good sign and yet . . . It still means that they have NO idea what to do.  So this is each team’s plan. 

Infectious disease is looking into some of the more rare viruses that cause fever, headaches, and dizziness for this long of a time. They are running more lab tests, throat and nasal swabs, and a possible cat scan. They are also considering stopping some of his medications because in rare cases they can cause fevers. They are also considering autoimmune diseases like lupus, rheumatoid arthritis, etc. And asking five million questions. 

Cardiology is looking at possible heart infection around the new valves, fluid buildup around the heart or inflammation of the pericardium. They are wanting to do an esophageal echo to take a closer look at his heart. And then run their own lab tests. They are going to move him to the 15th floor (which is the cardiology floor) to keep a better eye on him. His lab work came up with increased inflammatory markers. Sed rate, c reactive protein, and something else that I didn’t catch are all elevated higher than they were since right after his surgery. Their plan is to do a regular echo today and an esophageal echo tomorrow since he has to be sedated for that. If nothing comes up with the echo, then they are going to treat him for postpericardiotomy syndrome. Since that requires long term NSAIDs they will consult his renal doctor to see if they can do it or possibly try steroids. 

So that is what we know. Ben does not feel well. He is zoning on tv pretty good this morning. So at least he has a way to escape (at least in his mind) all of the questions, discussions, and pokes.  He is not happy about being here but wants to feel better so he is tolerating everything and is still being polite to all of the medical staff who come to see him. But this stinks. I hate this. I am really beginning to resent this place. And I especially hate that I am not allowed to think past tomorrow. One day at a time is all we are allowed to have. We know that they can find what is wrong and fix Ben but we wish the answers would come easier than they are.