This morning Elias went into surgery to do another bronchoscopy to see if anything presented itself as a cause for Elias’ episodes where he stopped breathing. They found that his airway is not very stable or safe right now. The pictures showed an extremely narrow path at the area where the vascular compression is believed to be. It is so compressed they want to do an Aortopexy. The Aortopexy is a surgical procedure in which the right sided arch is fixated to the sternum. It results in the tracheal lumen (canal) being pulled open. It is used to treat severe tracheomalacia or tracheal compression. The reason they suspect this is occurring now is this is the first time that Elias airway has been working correctly. They also said that the larger trach tube give Elias control of his upper airway and has exasperated and emphasized the malacia area below. This is what we had been asking about for the last few weeks, but it seems the inpatient doctors were not translating that to Dr. Rutter. He acknowledged that the last few weeks have been very frustrating for us, but also for them. We did have to take a step backwards to get us on the right path. The Aortopexy is not a guarantee fix though, but a necessary step to move forward. We will hope and pray it will do the trick.
As for the plan on when the surgery will be done, well hopefully tomorrow we will know more. We are in a holding pattern while schedules get worked out. Dr Rutter & Dr. Wood have expressed intense concern over the instability of Elias airway so this is a very serious find. It does appear that they want us to remain admitted until the Aortopexy is complete. One of the main reason is that while looking around they tried to push pressure into the trachea to push the compressed area open. They pushed in a considerable amount of pressure, much more than he would be getting normally. They were only able to see minimal opening with that, barely measurable. That is not good. So it would be safer for Elias in a hospital should his airway begin to close again. Dr. Wood said it would not take much for Elias to get into trouble and lose his airway. That is pretty profound coming from him and we understood the clarity of his message.
We at least got an answer and not left to wonder why like we have so many times before. It is difficult to describe the way we feel about it. We hate seeing him have to go through so much. This is another surgery to a growing list. It is more time in a hospital that has more days there than we do at home in Elias’ short life. It is the irony of having to make a decision to proceed with a risky surgery because doing nothing has even more risk. It is difficult knowing that Elias has some of the world’s best doctors scratching their heads over him and his care. It is the realization that Elias’ condition and issues are more serious and not as stable as his appearance would have us believe. However, his spirit and fight continues to drive us. It keeps us on point and able to tirelessly advocate for him. He is not giving up and neither will we.
Post surgery today Elias has needed a lot of care, specifically suction. He also had a period of about 50 minutes where he had a major coughing fit almost non-stop for that whole period. The bronchoscopy has irritated the trachea a little causing some minor swelling. The problem is that when your airway is already constricted minor swelling has major implications. They have given him steroids to help reduce that swelling and discomfort. Thank you all for the continued prayers. We hope that this upcoming surgery will provide the lift Elias needs to move forward.