When Broc was dx with his connective tissue disease he was not old enough to get a formal dx. He was 6 at the time and you have to be 9-10 yrs old. We have always known that he had this and just told his various team members that this is what he has and this is how we should proceed. He was dx with Ehlers-Danlos Type 3 also known as Hypermobility Type. Unfortunately there is no genetic testing for this type of Ehlers-Danlos. It is all done by a clinical exam and medical history and family history. His geneticist feels that he possibly has something else that is not yet discovered in regards to his connective tissue disease as he has some traits of the other EDS types too but doesn't quite fit in those boxes either so he has always called it Connective Tissue Disease Non Specific.Unfortunately it has never been formally written in his chart or history so we found out on Wednesday afternoon during Brocs pre-op testing.
Thankfully the thoracic surgeon came to see us Wednesday just to "pop" in and say hi. We would have only seen him on Thursday the day of surgery. We found out that if you have Connective Tissue Disease you are not a candidate for the Ross Procedure as it is. It will have to be modified for that person or something totally different would have to be planned. For that to happen the surgeon would need to go back to his drawing board and make a new plan. Especially when you are dealing with someone as complicated as Broc.
The Ross Procedure alone is a complicated procedure. Some say its almost as complicated as a heart transplant. On a typical person it would be a HUGE surgery. On our Buddy with a host of other complications added its an even BIGGER DEAL!!
Needless to say we were bummed , but also very thankful that the only person the surgeon was thinking of was Broc. He really has his best interest at heart and wants only the best for him. We ALL do. This week or next his surgeon will again gather his team and some of Brocs other team members to come up with a SAFE plan for Broc. As soon as we get the new date we will let everyone know.
To read about the Ross Procedure please look on the Pages section on his Blog and click on Ross Procedure. There you will find an explanation of the surgery and what that entails.
Instead of packing up the next day which would have been surgery day, Mark and I surprised the boys by taking them to the Indy Motor Speedway Museum. What an amazing place to visit.
It was a wonderful day that the boys are still talking about. I never knew the track was so big,nor the stadium.
For now we pray that Buddy doesn't get sick while we are waiting for the date. He is still very tired some days and takes naps during the day.
Thank you everyone for your love,support and prayers. 🐸🐸🐸🐸
No comments:
Post a Comment