Postponed...

Well, our trip to Boston has been postponed until October 31. The reason his appointment was rescheduled is that originally the surgeons in Boston were going to do surgery immediately following the bronchoscopy. We wanted to have an evaluation done instead which would include the bronchoscopy but not have surgery immediately following. Since there is a backlog of surgeries, they needed to give William's surgical spot to someone who needed surgery and we'll have an evaluation on November 1 instead.

We are trying to do as much research and have as much information at hand before our trip. We were able to find, through a long series of doctors and surgeons, a cardiothorasic surgeon at STL Children's who can do the aortopexy. The aortopexy is a surgery that will take the aorta and pull it towards the sternum and attach it there. This will relieve some of the symptoms of tracheomalacia William has. Tracheomalacia will not be corrected with this surgery, the only way it corrects is over time and hopefully by the time William is 5 or 6, his trachea will have hardened and be able to stay open by itself. The aortopexy won't be reversed and should not cause any problems as he grows.

The other surgeries the surgeons in Boston have told us about are if there is a recurrent fistula (the connection between the esophagus and trachea) and if he has a laryngeal cleft. We met with the pediatric surgeon who did both of William's surgeries at St. Johns and he is able to correct the recurrent fistula (it's unlikely William has one as he has no symptoms of this) and his ENT can do the laryngeal cleft surgery if needed.

We're eager to meet the surgeons in Boston so the tests can be completed and we can make a decision for William. We would prefer not to have him go through another surgery, but if it's the best thing for him and will relieve his blue spells and breathing problems, we'll do whatever is necessary. We're praying for God's guidance that he will help us make the right decision as to if William should have surgery and if so, who should do surgery.

Thank you to our families and friends for all their support and endless conversations to help us make a decision! We are so incredibly blessed to have such an extensive support system.

We'll keep everyone updated. (As a side note - I have some more "fun" blogs to put up and will try to do that this weekend!)

Love, Emilie