Recap

All of Keegan’s cultures, from blood to stool to urine and even the port that was removed itself, have come back 100% negative for bacterial and viral infections.  We have held his IV tylenol for a little over 24 hours at this point with no fevers.  The markers in his bloodwork that indicated inflammation have come down dramatically.  We may never truly know the cause of the fevers, but at least they led us to the CT scan that found the bad port.  Keegan has been unable to keep his potassium levels up the last two days, so we have had to supplement that via IV quite a bit.  At one point, his levels actually dropped after a dose!  Low potassium levels can cause arrhythmias, so we watch it very closely.  

Keegan’s bone marrow is still very suppressed, but he has not met any of the transfusion/support levels we set for him.  He will have two other surgeries coming up over the next two weeks though, so that may need to be addressed soon.  His GI symptoms have reached a new level of bad.  Really, really frustrating since no one really knows what to do with it anymore.  He spends alot of time curled in a ball from the stomach pain.  We’ve also had to go back to the maxed out level of blood pressure medication he was on before this weekend.

Dr. Guleserian, Keegan’s cardiothoracic surgeon, wants his heart catheterization done before we put another central line in.  She thinks (and we firmly agree) that we need a good map of his heart to prevent this from happening again.  This whole thing just doesn’t add up.  It’s not unusual for the artery to be mistakenly accessed during a line placement, and the surgeon who put it in back in December is one of the best we have on staff here.  If the surgeon had put it in the artery at the very beginning, he should have known it right away (the bleeding would have been hard to stop; the blood is a completely different color in an artery than a vein at that place in the body, and the contrast used to check placement should have “backwashed” out by the arterial pressures).  However, if it had eroded from the vein to the artery, Dr. G should have seen what’s called an A-V fistula when they flushed contrast into the vein after removing the bad port.  What we are concerned about now is some type of “architectural” anomaly that made it easier to miss the vein.  Dr. G said it appears the vein they targeted takes several 90-degree turns that it shouldn’t.  Only a cath would show us that in clear detail.  

We will talk to our main cardiologist tomorrow about a plan, but we anticipate going to the cath lab mid- to late in the week.  Assuming we don’t find anything that needs to be treated from that, he would go to surgery in the days afterward for a new central line (unclear if it will be another port or a broviac this time).  After the line is in, then he will start the steroid pulse as long as fevers haven’t returned.  We will stay inpatient for 2-3 days to monitor his response to the steroids before going home.  It is fairly certain we will not be home for Audrey’s actual birthday, but our greater goal is to be home for the little family party we were planning on the 11th.  The steroid pulse will last 4-6 weeks, followed by another colonoscopy and possible bone marrow biopsy.  If we see improvement in those scope results, we would make a trip to Boston for intestinal rehabilitation.  If we don’t see improvement, we will have to regroup and may still make a trip for a second opinion at least.