YEAH!! I finially found you all!!!

[Karlynn]

When will the heavens just open up and tell me the right thing to do!!!
Just call me Ms. Yo Yo....I went to bed last night with visions of aortic arches in my head.

I have always thought that I'd rather go through untold open heart surgeries than to have to deal with a child of mine going through it. My heart always goes out to you parents who are put in this position. You have my prayers. I know you will make the right choice with the best available information. Make the decision then don't look back and don't kick yourself for "what ifs". It sure sounds like Garin has the best Mom he could possibly have! My best to all of you.

 

[ALCapshaw2]

MANY good doctors (who have never done a Ross Procedure) have STRONG opinions about them (usually negative).

The ONLY way you will ever feel comfortable about the possibility of a Ross Procedure is AFTER you have your son evaluated by a Surgeon who has performed HUNDREDS of Ross Procedures with a good track record. You may even want to see more than one.

After a while you will gain a 'sense' of what 'feels' right / best for your son. It's one of those things you will just have to go through before you reach a comfortable conclusion.

IF you (or the surgeons) decide that a Ross is not a viable solution, then I would start asking about third generation mechanical valves (ON-X, St. Jude Regent, ATS, Sorin, etc). These valves are designed to provide 'smoother flow' and 'less turbulence'. This means they have a lower probability of producing blood clots than the older mechanical valve designs (such as the standard St. Jude valve - which I have) which many doctors still recommend because of their proven reliability.

Nobody said valve selection was ever going to be easy, but most of us do come to a conclusion about which set of negative aspects (they ALL have some) we can best live with. It's a good idea to have a back up plan in case your first preference doesn't work out (as happened to me).

Happy Hunting,

'AL Capshaw'

 

[gijanet]

I feel your pain............

I feel your pain............

although we don't have quite the options you do, I, too, am afraid of putting my four year old on coumadin - theoretically, for life! (Although the good folks here have made me feel somewhat better about this!) This will be Katie's fourth OHS, so I don't see as we have much choice but to stick a mechanical valve in her. Since your son has had no prior surgeries, I would be really tempted to go with the Ross - as long as you both understand that he will most likely have to undergo another surgery at some point.

I, too, wish for some booming voice from above to tell me what to do to lift this huge weight off of me..............

Good luck in your decision and you have our prayers. Please keep us posted. Hugs. Janet

 

[gijanet]

Wendy??? Is this you???

Wendy??? Is this you???

Has to be! Glad you made it here. Post an intro in a new thread of your own in the heart forum or pre-surgery one - probably pre-surgery with Andrew's surgery date so close. Gosh knows you need the good wishes, support, and prayers. These folks would be really great to use as a sounding board for your situation with Andrew - tissue vs. mechanical. Also, if you do a search on this site for tissue vs. mechanical, you will get some good info.

Glad to see you here. These guys are wonderful. Andrew is in our prayers. Hugs. Janet

Hello, I just found this sight through an online friend and when I saw your post knew I had to reply. I have a 15 year old son who will be having his valve replaced next week. Yikes! This will be his second replacement as he received his first at 6 yrs. Andrew has a St judes and has been on Coumadin these past almost 9 years. It hasn't been horrible but it does put some limits on what he can do. Andrew has a bit of a complex heart and it will probably slow him down anyways but if I had a choice I would look seriously at the Ross proceedure.

This time around we are hoping for a tissue valve. His Surgeon, Dr Mavroudis from Children's Memeorial did not specify what kind of a tissue valve but I am hopeful we can give him aleast 8 to 10 years with out the coumadin. Andrew was pretty steady the first few years but these last couple have been rollercoaster like. His cardiologist figures it is just because he is a teenager and they can be inconsistant about diet and everything.

If it is decided your son would be better off with the mechanical I would suggest you try to get a home monitoring system as soon as they will allow it. It would just be much easier. Normally you will only have to test once a month but in our experience it is sometimes been every couple of weeks when he is way off and even in a week. We never did get one even though I had asked for one. Now hopefully we won't need to test after a couple of months. Andrew has a carepage that we are keeping his updates on so feel free to check up on his progress at carepages.com. His carepagename is Andrewjosephspage. Feel free to email me if you want to ask anything or just chat.

Cocoalab

 

[FauxClaud]

Hmmm... Got a reply from Dr. Seltzer..sounds like I might have to go after Dr. Quagebuer for the offical second opnion...at least the field is getting more narrow. Like though elimination, a path is getting more obvious..somehow.



Thanks for your inquiry about your son and your comments on my website.
I certainly understand your struggle with the options and decisions you
have to make at this time. The recommendation for a mechanical valve
in
this age group is an opinion primarily of those who do not perform the
Ross Procedure. The Ross has gained extremely favorable position in
pediatric cardiac surgery over the last ten years. Unfortunately,
experience with the operation is still limited to individual surgeons.
In New York, the only one with major experience in kids is Jan
Quagebeur
at Columbia Presbyterian's Babies Hospital. He has done over a hundred
with excellent results and is an outstanding pediatric cardiac surgeon.
The aortic size of 5 cm is an issue, but at age 14 adult size
constraints can be used and this should, indeed, be taken care of. The
homograft is the best solution we have to replace the pulmonary once it
has become the aortic valve, but you are right that this will not last
forever. I am more optimistic that the majority will provide at least
15 if not 20 years of good service. (The new percutaneous pulmonary
valve procedure may extend that even more.) I think that the
advantages
of the Ross Procedure outweigh the difficulties by far and would
recommend it be seriously considered for anyone as young as Garin.

New York State is very fussy about the difference between pediatric
and adult cardiac surgery. The adult programs can only operate on
patients 18 years and older. Since I work only at an adult program
(Beth Israel) I could not help you directly even if the insurance
issues
could be overcome. (I did my384th Ross yesterday.) I am happy to have
had the chance to respond to your message, however. I hope this will
be
of help.

Sincerely,
Paul Stelzer, MD

We go for the MRI on Monday....
I feel pretty bad..I totally blew up at Garin yesterday. Not two days after I calmly explained to him that with his aorta being 5cms, I would rellay feel much more comfortable if he just refrained from the skateboard for the next month until surgery...then he comes back at me whining about how his friends are practicing tricks and getting better then he is. Tricks on skateboards ..THIS is what matters!!! ugggg...never mind that 5cms is NOT good and he should NOT endanger his aorta at all....
I showed him here...told him that he should really look about and read, ask questions..after all, you guys KNOW...nope, not interested...more worried about WHEN he can get his wheels back again.
I firmly believe that teenagers have mental issues that prevent them from understading true prioroties.

beating my head against a wall..oopps..I mean son's thick skull.

 

[PapaHappyStar]

Hmmm... Got a reply from Dr. Seltzer..sounds like I might have to go after Dr. Quagebuer for the offical second opnion...at least the field is getting more narrow. Like though elimination, a path is getting more obvious..somehow.

We go for the MRI on Monday....
I feel pretty bad..I totally blew up at Garin yesterday. Not two days after I calmly explained to him that with his aorta being 5cms, I would rellay feel much more comfortable if he just refrained from the skateboard for the next month until surgery...then he comes back at me whining about how his friends are practicing tricks and getting better then he is. Tricks on skateboards ..THIS is what matters!!! ugggg...never mind that 5cms is NOT good and he should NOT endanger his aorta at all....
I showed him here...told him that he should really look about and read, ask questions..after all, you guys KNOW...nope, not interested...more worried about WHEN he can get his wheels back again.
I firmly believe that teenagers have mental issues that prevent them from understading true prioroties.

beating my head against a wall..oopps..I mean son's thick skull.

Nice reply from Stelzer. Here is the pediatric heart surgery website at columbia:

http://cpmcnet.columbia.edu/dept/surgery/Cardio/PedCTSurg/PedCardSurg.htm

My surgery was at the adult hospital, I think the babies and children's hospital is much nicer. Quaegebeur is almost brusque -- and might be hard for you get an appointment to consult with him ( you should try to see him though if at all possible ). If you have an opportunity to -- consult with one of the pediatric cardiologists he works closely with:

http://www.cumc.columbia.edu/dept/pediatrics/divisions/cardio/cardio.shtml

Rosenbaum is pretty good, might be a bit of a struggle to get along with sometimes, but he is good at what he does and has a nicely run clinic/office, an advantage of seeing him is it will be natural to follow up with him as Garin gets older.

All the best -- and keep him away from that skateboard!

Regards,
Burair