My 7 month old daughter has VSD, ASD, Pulmonary stenosis and Great Transpostion of Vessels. She had a shunt put in when she was 1 month old and the Glenn Procedure at 3 months Jan 15, 2008. Her ductus was punctured when the aterial switch was placed in heart durning surgery and it caused her to have chlothorax fluid around her heart and right side of lungs. She was placed on no fat diet along with lasix, duril and aldactone for 6 weeks. We were seeing her cardiologist every two weeks she was home for a month when she was switched back to her regular Enfamil formula and no more fluid. Then the fluid reoccured on the right side of lungs and not heart so they had her back on Portagen and the durietics fluid was gone. On April 10 we were back in the hospital again the fluid had came back on the right side of the lungs and once again they put her back on durietics and it cleared, On May 15 we seen her surgeon he did chest xray and small tiny amount of fluid so they kept her on 1 ml of lasix and 1.5 ml of aldactone twice a day. Within a week the fluid reoccured again she is on this new formula by Enfamil called Enfaport. We keep asking the doctors why is leaving and then coming back we was told that it took 6 weeks for the ductus to heal and its been 4 months. Can you give me some advice on what is going on and what we should do. My daughter is 12lbs 2 oz at 7 months and it seem to me the durietics is only a temporary fix. Now they want to increase the duriectic once again. I'm thinking about getting a second opinion because we were told that the ductus would heal NOW they are saying the ductus never heals and they want to wait until she turns 2 years old to do the Fontan and repair the ductus if needed but if this fluid keeps reoccuring they will probably go in and fix it now.
I have a question about your post from your daughters heart surgery. Where did you have her repair done? I am sure you mean the thoracic duct was punctured which led to your daughter's chylothorax, correct? In my experience - I am a nurse who has worked at Children's CICU and am doing a rotation for my Masters in a Cardiac ICU in pediatrics - I have seen many children with chylothorax. It seems like many of these patients have repeated issues with a chylothorax. They end up getting chest tube after chest tube to drain the chylous drainage, which is what it sounds like you're experiencing. I'm also a little confused as to why they performed a Glenn procedure - I understand that she has pulmonary stenosis but this can usually be fixed by balloon dilation or repair of the actual valve itself. Did she have other heart problems as well? Such as a hypoplastic left ventricle?
Also, as far as I know - your daughter should be kept on diuretics. With pulmonary stenosis, her right ventricle is having to work twice as hard to pump blood to her lungs, even though she has the shunt and had the Glenn procedure. Perhaps her Glenn isn't working as well as they thought, which is what it sounds like to me since they want to go ahead and do the Fontan. I would feel that she needs to be kept on the diuretics until she can be weaned slowly off of them or until she has her Fontan procedure.
Please keep me updated with your progress - I'm very interested in seeing what happens with her.
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