Today has been a difficult day for us. Mostly, because we were unprepared to deal with anything today. We found out yesterday that the HLHS Hybrid (surgery #1 of three) surgery scheduled for this afternoon had been cancelled. This is because Josiah has shown strong improvement over the last 8 days, and the doctors want to give him more time to work through some of his problems on his own. The surgery has been scheduled tentatively until Tuesday, on the long shot that he might improve enough over the weekend to go ahead with the Norwood procedure.

The Hybrid surgery by the way, is a relatively new procedure that uses both a heart catheter, and an open chest (not open heart) surgery to repair Josiah's little heart. They put bands on the pulmonary arteries, to restrict blood flow from the heart to the lungs, because too much blood is going there right now. Also, using the catheter they put in a stint in his patent ductus arteriosus (PDA) to keep the duct open that is now kept open by a drug dripped into his IV all the time. The benefit of this surgery is that Josiah will not be put on a heart bypass machine. A heart bypass machine puts extra stress on the kidneys, and Josiah's kidney function is currently poor. This makes him a good candidate for the Hybrid. The negative of this surgery is that it adds some additional elements to the Glenn surgery. (surgery #2 of three) But, this is not really a concern for us right now. Our key is to get him healthy enough to go home and grow for a while.

Today's frustrations are related to Josiah's very high irregular heart rate. It was over 212 bpm for what seemed like a very long time. The nurses started by trying to surprise him out of it, by using ice packs on him, among other methods. It worked a few times, but ultimately he could not shake it off. The next step was to "pace" him out of it, using a pacemaker from the 1970's, which is attached to an electrode that is put down his esophagus and placed in close proximity to his heart on the inside. It sends impulses to the heart at 300 bpm and higher for just a few seconds, which confuses the heart and "resets" it back into a regular cadence. This worked for Josiah a couple days back, but today they went all the way up to 700 bpm, and he would not drop out of the SVT (supra ventricular tachycardia) fast heart rate. So instead, he was put on a different medication that drips into the IV line, but takes a full hour to empty into his system. (His little body would not be able to handle the medication any faster.) Josiah waited a full 58 minutes before responding to the medication, all the while his heart looked like it would beat out of his chest. This was a tense hour for us!

Turns out, throughout all of this heart pounding, Josiah's blood pressure remained constant, and he in all other facets was still in control of his own body. Somehow, this is completely unrelated to how soon or late we get in to do his next procedure. It may even have little to do with Josiah's heart condition. Why can't we just have a "normal" day in the PCICU?