Pediatric Heart Expert Forum
Question about VSD & Heart Failure - Worried
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Question about VSD & Heart Failure - Worried

I've posted on here before, but what I'm wondering is how urgent it is for us to see a cardiologist. We live in Canada, and I honestly think they're putting her off too long.

Our daughter was born with a moderate sized perimembranous VSD, while not involving her valves, is located very near them. She is in congestive heart failure, her heart is starting to enlarge, she is on 3 different heart medications (Digoxin, Spironolactone, and Lasix), is not able to eat well (the most we can get into her in a day is 15 oz, she averages 12-15 oz per day) and has dropped from gaining 5-6 oz per week, to now only gaining 1 oz per week... and we STILL have not seen the cardiologist.
She had been doing better eating with the new medications, she wasn't falling asleep with her feeds and we were able to get 2 oz. into her in 10-15 minutes, however, in the last few days, she's started falling asleep again with her feeds, and it's now taking up to 45 minutes to get 2 oz into her, because she keeps falling asleep. Yesterday, while I nursed her 3 times (about 5 minutes each time), she only took 9.5 oz of formula.
We aren't set to see the cardiologist until September 29th, but I'm honestly worried if we really can wait that long. To me, it doesn't seem wise. She's not getting better. Our pediatrician is on vacation, so I don't know who to call or what to do.
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Dear Mshanson,

I am not totally familiar with the Canadian healthcare system, but it seems to me that if you are concerned about your daughter’s intake, growth, sleep, and CHF, it would be appropriate to contact your cardiologist directly.  If your cardiologist is not responsive, then it would be imperative to find another pediatric cardiologist quickly or take your daughter to the Emergency Department.
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The Children’s Hospital of Philadelphia
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