Wait and see

Riley is back in the PICU. The cath showed that the Fontan and the hepatic vein connections are working properly. So surgery isn't on the table just now. Basically Riley's heart is not able to relax properly to allow blood to flow into the heart. As a result his pulse is very high but his pressures are low. They are treating him right now with milrinone, nitroglycerine and amiodorone. He is sedated, on the pacemaker and intubated and will stay that way for 24-48 hours to keep stress off his heart and to allow the medication to hopefully have an effect. What they want to see are an increased BP and a reduced pulse rate. Ideally he will show signs of recovery and the issue will either slowly go away or be treatable long-term with medicine. If there is no improvement, the fall-back option is to go back into surgery and reverse the Fontan, putting Riley back into the Glenn anatomical state. That's a pretty ugly option since it means more open heart surgery but also an unknown long-term outlook: Riley is having the Fontan because he is slowly outgrowing the Glenn, putting strain on his heart. Dr. Karl said this is something that is done only in very rare cases, he said less than 5% of Fontans. The cardiologist was more optimistic, she said she's never seen a Fontan need to be reversed in 15 years and encouraged us to take things day-to-day or hour-to-hour: there are lots of medical options still to be pursued. She also used the term ectopic atrial tachycardia (David?) as one of the possible diagnoses.

Riley is comfortable and sedated, it's obviously a big step backward since he's in the same condition he was 36 hours ago. Now we just wait and see and hope for the best.