Elias has completed his heart surgery. The cardiac surgeon was pleased with the way the operation went. He was however shocked at how different the anatomy of Elias heart was compared to what they saw in the CT scans from a few weeks ago. The vascular ring repair was completed. They also found that Elias had a Cardiac diverticulum: A rare congenital heart malformation involving the outpouching (diverticulum) of a ventricle. This was surprisingly very large and was actually what was placing the majority of the compression on the trachea. So this was removed. They did not do the carotid-subclavian reimplantation because the carotid artery could not be found easily, so the subclavian artery was simply clamped off after ensuring his arm was getting enough blood. The surgeon said he found Elias to be very interesting in his cardiac anatomy, which is no surprise to us considering what else is different.
Elias is now in ICU and of course began the evening by fighting the medications. He is intubated and the trach tube is not in at the moment. They apparently had some difficulty with maintaining pressure properly with the trach tube so he had to be intubated. This is a little concerning because they are not sure if this is a sign indicative that the compression release was not the complete answer to the airway problem, but necessary to open the door to other positive interventions. It could also be just post surgical recovery issues. The jury is out on that still and it will be a day or two before we will know for sure. We finally have him sedated enough with a variety of medications including dexmedetomidine, morphine, fentanyl, & versed, most of which are given every half hour. Elias has a chest tube in as well and is on about 60% oxygen with a rate of 35 on the ventilator. It took nearly four hours to get him sedated and calm enough to sleep. There is no plan to wean him off overnight so it will be tomorrow probably. Seeing Elias tonight really brought back some unpleasant memories from the early days in the NICU. Seeing all the tubes and wires and of course the intubation. I think the intubation was what really set off the memories. It was a little rough at first. Thank you all so much for your thoughts and prayers. We certainly appreciate it and know that helps Elias’ strength.