Did you know that 1 in 100 babies in the U.S. are born with a congenital heart defect? CHD's are the leading cause of infant death, and the #1 birth defect of live infants. The cause of most congenital heart defects are unknown, yet funding for research vastly lags behind childhood cancer and other genetic diseases.

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Tuesday, June 7, 2011

A Bit Disappointed

Well we went to Stanford last week and went through the process of checking Nicholas' heart.  We met with the team on Wednesday for pre-op, and then on Thursday Nicholas had an MRI and cardiac catheter.  The results were disappointing.  We don't have the MRI report yet, but we can presume that not much has changed since before his PA Band was placed in December.  The heart cath measured Nicholas' gradient at around 30 mmHg.  This is almost exactly where he started.  We haven't spoken to Dr. Hanley, because he was in back-to-back surgeries and we checked out of the hospital before he was out of surgery.  But we have a phone consultation set up for this Friday and we will have the full report and he will give us his recommendation for the next step.  Dr Peng, who has done both of Nic's heart cath procedures, talked with us and she speculates that Dr. Hanley will want to re-band sooner rather than later.  So I think we will probably be looking at another open heart surgery sometime this summer. 



I will keep you posted......
Nicholas sleeping soundly after a long, busy day of testing.
Nicholas with Clarice, ready to go home
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1 comment:

  1. Carole HiebertJune 7, 2011 at 8:48 PM

    Oh - those rosy cheeks! That is disappointing to hear. I thought that the gradient had actually increased right after surgery?....tell me if I've got the facts mixed up. Is he doing alright otherwise? Any signs of HF at all? Praying for you all. All the emotions that are going on right now, and mentally too, are just so exhausting. Hope the phone consult goes well - and you can have a good informative discussion.
    Hugs!
    Carole

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