Not sure where to start. We made it to Duke today so Eddie could meet Dr. Gaca, the cardiothoracic surgeon at Duke. Everything went as expected. Dr. Gaca, of course, agrees with the recommendation to have surgery now since many Loeys-Dietz patients have an aorta that dissects between 4 and 4.5 cm. He agreed that Eddie’s aortic valve looks great, and we do not anticipate needing to have it replaced. Therefore, valve sparing it is. However, he went over what would happen if they get in there and see things differently. Nothing is 100% until they are in the surgery and can see it with their own eyes.
We have scheduled the surgery for July 20. Eddie wanted it as late as possible so he could enjoy some of his summer break. Dr. Gaca believes as young and relatively healthy as Eddie is, he would likely be able to go back to school before the six week mark although he will have activity restrictions until six weeks after surgery. It takes six weeks for the sternum to heal so he has to be careful until then. Eddie was assured that after six weeks he will be able to resume playing golf and helping with the Wake baseball team. Of course, that was most important for Eddie to hear.
Dr. Gaca said Eddie will likely be in the hospital a week after surgery. He will return for his first post-op visit two weeks after being released and then another appointment at the six weeks mark.
Dr. Gaca walked Eddie through the surgical process just as the team at Hopkins did. Basically, Eddie will be admitted to Duke the afternoon of the 19th. He will have a CT scan that night to check for any other aneurysms and to make sure there are no surprises in the surgery. His surgery is scheduled for 7 am on the 20th. He will be put to sleep and have a breathing tube inserted. The surgery is anticipated to be about four hours long. They will put him on a heart-lung bypass machine and remove the weakened and dilated portion of the aorta which will be replaced with Dacron. His aortic valve will be removed and sewn into the synthetic aorta and then all of it attached back to the heart. They will then wire his sternum closed.
After surgery he will be in ICU overnight where they will remove the breathing tube, monitor him, and try to get him up a little. The next day he will be moved to a room. Each day he will have more tubes removed as he will have numerous things hooked up to monitor and care for him until he has no more tubes and can go home around a week after the surgery.
Eddie is mainly worried about the pain. Dr. Gaca did not sugarcoat anything, but he was kind and reassuring. He explained that they will work hard to manage his pain, but some pain was to be expected. He said that it his experience that younger patients like Eddie do experience more pain, but the healing process is faster, easier, and with fewer complications.
Eddie was pretty quiet during and after the appointment. He said that it was strange because before today he knew he was going to have surgery, but now it all seems so real. It was not an easy day for him, but he handled it like a champ. I am concerned about setting the surgical date two months out as I do not want him to dread and worry in the mean time. However, with this date he will be able to celebrate his 16th birthday, get his license, attend Wake’s postseason baseball games, and help at two Wake camps this summer. I know that is of the utmost importance to him, and there is so much about his health he has not been able to control. Therefore, he is getting control over when in the summer he has it. It’s really the least we can do for him.
He has expressed that he dreads his friends asking about today’s appointment. I guess it’s overwhelming wanting people to ask and show concern but also wanting to not be reminded. He said he was achy and a bit sick feeling after today’s appointment because of the stress, but that seemed to get a little better in the evening. He and his dad played video games and there’s nothing like some video games to help ease a teenager boy’s mind.
I suppose now it’s just a countdown. Many of you have shared that you are praying for our family. Thank you for that. I’ve had meals provided and friends that have stepped up to help us with Deacon. It’s been awesome. Thank you for that to those that have contributed, shared kind words, and prayed for us. I suppose at this point some specific prayer requests would be that Eddie can relax and enjoy the time until then, that his aortic valve and the CT scan does not reveal any surprises, and that as parents Rick and I will know what to say, when to say it, and when to keep quiet.