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Has anyone had a child have open heart surgery? I need help! Update#3

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Yesterday at a routine vist to ds cardiologist a new problem was discovered. He had surgery as an infant, but they were able to go in through his side as opposed to opening his chest. This new problem makes it necessary to go in through his chest to fix it. I am so upset about this, it's a nightmare. Ds is soon to be 5 and he struggles with language. We thought his heart history was just that and our main problem with him would be getting him over these developmental hurdles. My question to u ladies is, what should I ask about, what should I make sure does and doesn't happen with all of this? The ct surgeon who did the first surgery moved away, should I track him down and ask him to do this surgery too? Is there a best place to go for this surgery? Thanks for all your help in advance.

We spoke with the cardiologist last night and we will be scheduling a heart cath today. I was disappointed that the cardiologist forgot to mention that ds already has thickening of left ventricular wall when I asked about what his partners thought. We r off to cinci today learn the results of ds evaluation.

Taylor is not autistic, but he did fail the ados. They say he just has expressive and receptive speech delay. They did refer us to start following up with a new clinic they just started, neurodevelopmental cardiology clinic. They believe there's a connection between congenital heart defects and developmental delays. They are pushing us to put him back in public school. His heart cath will be this Friday.
by on Feb. 4, 2012 at 5:05 AM
Replies (21-25):
sizegirl
by Member on Feb. 22, 2012 at 5:14 PM

good luckyou rockbowing down

letstalk747
by Joy on Feb. 22, 2012 at 5:21 PM

 no open heart here , hugs

newmommy-again
by on Feb. 24, 2012 at 8:35 PM
Good luck and you know in your gut what and who would be best, so trust your gut.
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freeanhappy
by on Feb. 25, 2012 at 12:00 PM
My dd had open heart surfery at 6 mos ans is 15 now Shes got otger problemsbut vert hapoy 15year old. Shes done lots of spoets and I dont stop her from trying anyrhing .
sizegirl
by Member on Feb. 26, 2012 at 12:36 PM

WE are praying for you both that everything is going to work out well and he will be okay, stay strong

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