Derek update

[derekzmom]

I talked to Derek's PC today and he said they were considering another valvotomy (didnt know he had a first) and sub-aortic stenosis resection. This would make him about 50% better than he is and give him another 3 - 5 years before he needs the Ross/Konno done. Although once they get in there it may be decided that he needs it right away. There is going to be a meeting on monday with Derek's surgeon to see if he were to need the Ross if he would be comfortable doing it as between him and the other surgeon they have only done 6, with 5 kids surviving. There is no one in Canada with much more experience so if he (the surgeon) isnt comfortable (as Derek is rather complicated) he may be sent to the US, probably Lucille Packard Children to Dr. Frank Hanley.

I'll update when I know more on Tuesday.

Hugs

Allison

 

[hensylee]

Allison, I am sure you are going through some kind of personal h*** with this, but you have my prayers all the way. We wait to hear. Ann

 

[dwfreck]

Allison,

It sounds like your doctors have a good grasp on what's going on and really trying to do right by you and Derek. Hang in there. You have my prayers as well.

By the way, I'm plannning to meet with one of the two local Ross procedure experts here in Cincinnati to see whether I should consider that option. I'll ask him if he knows anyone in your part of the continent. I'm also planning to ask him about the CryoLife SynerGraft valves, so, hopefully, we'll both have an answer about them, too.

 

[Karlynn]

Allison,
Thank you so much for updating us. Derek (and the rest of you) is often in my prayers and will continue to be there. Continue to keep us posted when you can.

Karlynn

 

[Heather Fisher]

Please let us know what they suggest. I'll be praying for you!

Heather

 

[RickKiem]

We are praying for Derek and you and hope that you get the answers that you need soon.

Rick

 

[medtronic of borg]

Dr's

Dr's

The kinds of things you are talking about take a lot of skill !! I had a sub- aortic liagation in 1969. A resection is in that ball park. Be very careful to find the best Dr. I know were I would go, but that is inmaterial. You must like the numbers. 6 isn't enough to tell you much other then they were being honest with you. Don't be afraid to pick up the phone and call several cardio's leaving exactly the same message to each when they get back to you compair notes.

Med

PS You may want to punch up clevland clinic heart forums and ask some Dr's your ? ther.

 

[derekzmom]

Thanks for all the thoughts and prayers. I finally find out tomorrow. (I hope) YAY!!!! It will be much easier to know what when and how things are going to happen.

Med - I do agree with you about the 6, and I do think that if our surgeon isnt comfortable then he will say so. If Derek is to have surgery outside of Canada we were already pretty much told that it would be with Dr. Frank Hanley at Lucille Packard Childrens Hospital (Standford) and from what I understand he is in the top 5 paediatric cardiovascular surgeons in the world.

Hugs

Allison