More Changes, More Complexities

The surgeons came in this evening to inform us they are no longer going to be involved with the next step. They are bringing in the cardiac surgery team. There are some more complex issues that require the specialized technique of a heart surgeon. As it was explained to us, after reviewing the scans more closely the aberrant subclavian artery is causing more compression on the trachea than an aortopexy alone could resolve. It also appears that the combination of the right sided arch and subclavian artery has created a vascular ring that needs to be repaired in order to release the compression on the trachea. This might be enough to release the compression. They did say that they may still need to do the aortopexy, which would more than likely be done together if they see the aorta needs to be anchored. We do not know much more than this at the moment. Dr. Rutter and the cardiac team will hopefully meet sometime tomorrow to go over things and we will get the new plan. We were not exactly expecting this, but honestly can’t say we are shocked. It does seem to make things a bit more involved with different risk associated with this course. I think once we get a chance to talk directly with the cardiac surgeon, tomorrow hopefully, then we will have a much better understanding of everything.

As you hopefully saw in the update from earlier the photo of Elias was indicative of his mood for the day. It is the best he has felt in weeks. We all had a great time today. Child life brought us a play mat to put on the floor and a bumbo seat. Elias had so much fun getting down on the floor and playing. He was even a little more receptive towards Q4 assessment of vital signs and the arbitrary doctors that would pass through. It always amazes us how great Elias’ attitude is, even when things are not going as well as we would like. It really helps us get through these very difficult spells. We also appreciate all the wonderful words of encouragement during these rough times. It is so comforting to know that Elias has so many wonderful people praying and sending positive thoughts. That is a blessing in itself and we can never express enough our gratitude for all of our friends, family, and fans of Elias!