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Post by christie on Sept 7, 2004 22:12:31 GMT -5
My little Character has a heart condition that has nothing to do with DS, as lots of you know, and has been to Columbia in NY City twice now and both times was unsuccessful in correcting it K, he was also born with a VSD that seem to correct itself over the years but in doing so seems the way it corrected itself has created a leak in a major valve I think it is. I have major trouble following the medical stuff, true brain melt down when I am talking to a Doc Seems from checking it regularly both heart Docs, which are partners, have different opinions Hmmmm One wants to be aggressive and correct it and the other wants to take the wait and see approach. K, without going into great detail let me just tell you Chris has had a few surgeries over the years and not one has gone well , ALWAYS a big ordeal Colin and I feel like we are at a crossroads and hate the fact that we have to decide. Man oh Man what if we make the wrong decision?? One says wait till he is older and the other says I would do it now, Hmmmmm Who the heck is right? I say, can I forget bout all of this?? I just want to be a kid again and have everyone tell me what to do, KWIM? Just needed to share so my brain keeps from exploding, thanks for listening... CC aka BRAIN OVERLOAD tonight
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Post by meghans_mom on Sept 7, 2004 22:31:52 GMT -5
CC - hugs and vent away! Have you gotten another opinion from a totally different practice? there is a very good children's hospital here -- Schneiders, I think it's called? (on long island, in queens) and also a specialized heart surgery hospital in nassau county - st francis. meghan's heart doc is also on the queens border, and the whole group is soooo terrific. anyways - i don't know how far you are from the island, so it might not even be an option - but if you want any info on either of the 3 places, let me know.
sorry if you didn't want any input on this -- but just wanted to let you know we're here!! laurie
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Post by Emilysmom on Sept 8, 2004 6:34:44 GMT -5
Christie~ First of all, I want to say that I sure wish things were easier....these are really hard decisions to make! I really feel for you and Collin. You want only the best for Chris and it sure would make it easier if "the best" was more clear cut!!! Laurie's idea of a totally separate opinion by a well known, skilled cardiac specialist is a GREAT one. I would consider his advice and see which of the other 2 docs' opinions he leans toward. Hugs, Susan
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Post by rickismom on Sept 8, 2004 6:40:55 GMT -5
CC, get a second opinion if you can afford it. Then, when you DO make your decision, just put your package in G-d's hand: "G-d, I made this decision as well as you can. YOU please give us success with this choice." There is NOTHING more that you can do. Good luck and hope you don't fret too much (tho' you surely will.....)
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Post by Pat on Sept 8, 2004 6:54:15 GMT -5
What a position to be in. {{{HUGS}}} to you girl. If you trust both docs, let them give you more answers as to why wait or not and what they think the consequences of both would be. To a point I agree with Laurie, but if you trust both of these docs, it could be just one more opinion, or it might give you the answers you need. The cardio docs at CHOP of Phila are really good too. I'll be praying for wisdom for you and Colin.
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Post by Mary_L. on Sept 8, 2004 6:55:18 GMT -5
~*~*HUGS~*~*~*
I can't imagine how hard this decision must be. I don't know what I would do in your position but I will pray for you that you are able to make the best decision for Christopher. Mary
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Post by laurasnowbird on Sept 8, 2004 6:56:50 GMT -5
Christie - hugs to you and Colin! It seems so unfair sometimes the position that we find ourselves in as it relates to surgeries. No parent wants to subject their child to unnecessary surgery, especially when they've had the kind of experiences you have had with Christopher and surgery. I'm more than a little disturbed that two doctors within the same practice are recommending different options, and forcing you to be the one to choose. Bad patient care, in my opinion.
I'm firmly with Laurie on this one - I would get another opinion, and if possible, by someone with some expertise in DS. I would probably not go ahead with surgery unless someone could show me a CLEAR benefit to it, as well as a serious risk if he were not to have it.
That's my thoughts, take them for what they are worth, but know that I'm soooo sorry that you are in this position. I agree with you about wanting to forget all about it, sometimes the responsibility of making all these medical decisions really weighs me down too. And we haven't experienced as much as you have, or as much as many other families here have. Christie, I am confident that whatever decision you and Colin make will be the right one - you both know him better than any doctor ever can. HUUUUGE hugs to you, my friend! Laura
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Post by Betty & Ian's Mom on Sept 8, 2004 8:20:40 GMT -5
Oh Christie, I hate making tuff decisions like that too !!
I would definitely get at least 2 more opinions from 2 cardios that don't know your current ones. I did that with Betty. Made it alot more easier to make the decision.
Hugs to you !!!
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Post by Alice on Sept 8, 2004 8:25:22 GMT -5
Hugs to you! Geting a second or even third opinions is very good idea. Hugs, hugs, and good luck... I will say prayer for your little character...
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Post by Tammy on Sept 8, 2004 9:05:46 GMT -5
CC.... all I can say is...
Mum knows best....
Get another opinion, consider the 2 out of 3 , and go with your "Gut" feeling
And whatever happens... I wish you the BEST!!
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Post by wrblack on Sept 8, 2004 9:47:43 GMT -5
CC -- Your little character's heart antics would scare the *^#+ out of me. Glad you're sorta used to it but don't think anyone could ever really get used to it. Have you considered going south for a tie-breaking vote? There are a number of excellent pediatric cardiologist at CHOP. There's also a school of thought that cardiologists are a bit brainier than heart surgeons. Take Chris to Philly, meet a kiddy heart doc who is not going to be invited to do any procedure or treatment--just a consult. Lay out history, reports, dx's, proposed alternatives and see what this hopefully smarter than average kiddy heart doc thinks. What would you recommend, what would you do if this were your own child, always seems like a good question to me. Oh, and you wouldn't necessarily have to go all the way to Philly. I could give you the name and number of a guy (excellent pediatric cardiologist who has seen a few kids with Ds, I believe) who comes to the CHOP Princeton satellite office, if you'd like. Best regards, Bob
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Post by MB on Sept 8, 2004 12:00:00 GMT -5
Just want to say you have received excellent advice so let me offer heartfelt prayers.
MB
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Post by Jackie on Sept 8, 2004 12:09:04 GMT -5
Nothing at all wrong with getting as many opinions as you feel you need. God Bless
Jackie
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Post by Staci on Sept 8, 2004 12:13:25 GMT -5
Christie I'm so sorry you guys are having to go through this Having 2 heart kiddos of my own, I can understnd how scary this heart stuff can be. I agree with what others have said about getting a second, third and a FOURTH opinion if you have to! Doctor's can be so conflicting! When I was pregnant with Parker, I was seeing a doctor who was telling me that my baby had a heart defect and she wasn't expected to live long after birth...I got a second and third AND a fourth opinion after that doctor who all agreed that my baby had an awesome chance of survival (a 99% chance!), and they were more than right! Just an example of conflicting doctors! Hugs to you all...hang in there. Staci
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Post by Danielle on Sept 8, 2004 16:14:48 GMT -5
Aw...my friend, hang in there.....I don't blame you one bit for being nervous about any surgery for Chris...maybe get a third -- even fourth -- opinion and see if that sways you one way or another?
Hugs to the family....and whatever you decide, it'll be the right decision for Chris, I have no doubt.
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