Our second daughter was born on December 3rd 2012 with a heart condition that was missed during the pregnancy and after birth as well. We were sent home with what we thought to be a healthy baby because that is what we had been told when sent home. Our daughter had coarctation of the aorta, mild pulmonary stenosis, and large VSD. When the duct started to close off, the coarctation took its full effect and our daughter went into cardiac failure. She was air lifted to IWK Halifax hospital in Canada where they did the surgery to repair the aorta. We were in hospitals nearly 2 months. We are now home struggling with weight gain and medications administrations.
My question is the following: our daughter is currently on Aldactazide, Maxeran, Lasix, and Prevacid. She has severe reflux and it is difficult to keep the formula down. Potassium was high at her last blood work and we are wondering if the combination of those medications should be of any concerns to us? She is NG fed as she still gets very tired easily and can't manage to finish a full feed of 83ml per feed (Nutramigen fortified at 27 cal). We normally have to tube feed 50% to 75% of each feeds. She is Q4 at 140 ml/kg/24 hours. Simply wondering if anyone out there would have anything to share with us; any type of information would be greatly appreciated. This is all very new to us and although we've managed to educate ourselves quite well in a short period of time, the more information we have, the more comfortable we are with our little one. Thank you!
Without evaluating your daughter, I cannot say exactly what is going on with her. Certainly, the spironolactone component of the Aldactazide can elevate her potassium, but the elevated potassium could have easily been due to red blood cell damage at the time of the blood draw. It sounds as if she likely has a fair bit of congestive heart failure, in that she is fatigued and cannot feed easily. In our experience, if the patients continue to have heart failure despite medical management, we typically lean toward surgical repair of their defects. I would recommend discussing your concerns with your pediatric cardiologist and getting a clear set of plans for timing of her intervention, as appropriate.
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