Maybe headed back into the operating room...

Well, I haven't had much time to update lately because Mr. Ethan has been very awake and his usual high maintenance self. For a time he even had more IBS (Irritable Beef Syndrome) than usual. It turns out, it was narcotic withdrawal! I know, crazy, right? He had to be so sedated the five days between his scheduled surgery and actual surgery because of his Tet spells and then after surgery for pain that he became addicted. My baby is on Methadone to ween off the drugs!!! Apparently this is pretty common but I never imagined I would be able to say that my 6 month old is a drug addict. : )

Soon after my last post, the breathing tubes came out and shortly there after, we noticed some blood in his urine. We figured that it was just trauma from the Foley catheter but of course it was not that easy. It was not actual red blood cells but blood parts. At first it was thought that this was some sort of transfusion reaction because his red blood cells were dropping dramatically causing him to need two more transfusions. Now the thinking is a bit different. Somewhere in his body, probably in his heart, the red blood cells are being broken apart and leaving his body through his urine. The process is called hemolysis. They say they usually see this in other kinds of heart procedures where they put in artificial valves and such but not usually in Tetralogy of Fallot patients. While his red blood cell count is still dropping (possibly leading to another transfusion) the hemolysis seems to have slowed down. This is mystery # 1.

Now on to mystery # 2. His heart rate became elevated and his oxygen saturations in his blood lowered a bit on Saturday. This earned him an extra night in the ICU but we are now in the regular cardiac unit hospital rooms. After repeated echocardiograms and many discussions between cardiologists and surgeons, it has been discovered that the pulmonary valve that was constructed during his surgery has some sort of muscle bundle on it causing the valve to actually obstruct the flow through the main pulmonary artery. A couple weeks ago, not a problem. He had a bunch of collaterals and a hole between the ventricles to kind of make do. But now that all this is repaired, big problem. He is on a beta blocker to slow his heart to allow the heart to work more efficiently past this obstruction. If this works, it may be a longer term solution. If not, we will be back in the OR probably in a few days. We are having another echocardiogram tomorrow to help make the decision.

Leave it to Eef to be the case that has completely thrown the doctors for a loop since the beginning (remember the flu tests??). He is hanging in there and is such a strong little munchkin. We thank you again for all your prayers, we still need them!

-h