Today remained calm and uneventful. Elias breathing was a little less labored, but he will remain on the 100% oxygen. They are also given him diluted lidocaine via the trach tube to help numb the compressed area of his trachea. Dr. Rutter believes the violent coughing fights are caused when the compression is at its worst and Elias coughs. When he does this it causes the walls of the trachea to touch and cause him a gagging reflex that is making him cough more. This creates a vicious circle that Elias has little control over. While the lidocaine does not make these spells go completely away they are significantly reduced. These contribute to Elias deteriorating breathing patterns and by diminishing the frequency it is allowing him to have less irritation and control his breathing a little more. We will hope for continuing success with the use of this drug to help get us to Wednesday. We were able to get Elias up and playing some today. His stamina was very low, but we pushed him a little. You could tell he was enjoying the time, but was also ready to just rest when the opportunity came up.
With all the insanity on Friday I had to put off sharing what the cardiac surgeon discussed on Thursday. Seeing how the plan was developed after we had our discussion, it is very likely that most of what we discussed is no longer valid. Rather than attempt to document here a lesson on the heart, I’m not even going to try, especially Elias’ heart! I will wait until he explains things more clearly on Monday to try and paint a visual. I will say that he showed me the CT scans which they can use to create a three-dimensional reconstruction of the heart. Elias has a vascular ring created by a right sided aortic arch and a left aberrant (abnormal position) subclavian artery. All I have to say is that as with everything else that is different about various anatomy systems in Elias, the heart is no exception. There is likely more to be done than just fixing this ring and that is part of what he was trying to obtain information towards. There were some other oddities on the CT scan that he predicts are also contributing to the problem as well. To put it in very simple terms Elias is likely going to be getting a replumbing of his heart. More than likely the cardiac surgeon will be able to enter through the left side and not have to open the chest. We are admittedly getting a little nervous about this operation. This is probably one of the most intense and stressful he has had in his plethora of surgeries. Hopefully, hearing the plan on Monday will help ease the minds a little. Thank you all for your continued prayers.