11:00 update

We're HOME. Thankfully, the cardiology fellow who is on this weekend is "pretty" familiar with the complexities of Malachi's heart issues. Although, there aren't many at Riley in the cardiology department that we have yet to work with. On two separate occasions today Malachi was sustaining a heart rate from 180-230 bpm. A kid with a normally structured heart could tolerate this for over 24 hours, but it's not so good for our little man. At the hospital, he was still jumping all over the place from 110-210 bpm, but he was not sustaining the high heart rates. After a few more hours of waiting for results from blood work and things, the rate finally began to even out around 130-150 bpm. The fellow left to go speak with an electrophysiologist (the kind of specialized doctor who is more familiar with drugs like flecainide) to see about weight-adjusting his dose and sending us home. And that's what we ended up doing. He was still having spurts into the 170's-180's range, but only when he was ticked. Normally, Malachi doesn't get too ticked, but tonight something as little as suctioning his trach would set him off. John decided to pick him up and hold him tight for a little while and his rate didn't necessarily calm down right away, but his demeanor was MUCH improved and he quickly fell asleep. We are thankful to be home, but we won't be shy about calling the cardiologist on call tonight either if something seems fishy! No night nursing help tonight, so John gets first shift and I get the early morning shift. Pray for strength and sanity!