Guest guest Posted May 18, 2008 Report Share Posted May 18, 2008 My son had his a/v canal surgery about a month ago since then we have been readmitted to the ICU twice. During his surgery a lymph was nicked and the fat from the breast milk has been leaking into the space around his heart (chylothoracic effusion). This past monday he had another opperation where they put a hole in the space arouond his heart so the fluid drains into the space around his lungs, apparently the lungs can handle the fluid better than the heart. They have also put him on formula called portagen that tastes horrible and he throws it up. The Dr's do not seem worried about the throwing up, but I hate seeing him go through this. We are still in the hospital he has a chest tube in so they can monitor the fluid. I am wondering if any of you out there has any experience with this type of complication? Thanks, - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2008 Report Share Posted May 18, 2008 Wow - Your story has just brought back a flood of memories from Zoe's AV Canal Sx. Zoe had the same nick happen during surgery and had to go on the Portagen. Don't worry- the 6 weeks will go by faster than you think (or however long they told you that he will need to be on that). It bothered me extremely bad when they told me that Zoe had to stop nursing and go on that formula only. It is expensive too~!~ Plus I could only get it at a medical supply store and had to order it about 2 days before I could pick it up. Needless to say, I was very careful not to order more than she needed so that there was none wasted. Zoe actually did well with the Portagen surprisingly. The Drs even joked that she should come back and give a seminar for all the other babies... maybe we should get your son and Zoe on the phone! haha. Have you tasted the stuff yourself? It is awful! Don't worry about him throwing / spitting up a lot of it. He will still get the nutrients he needs and as soon as the hole heals, you can fatten him up on the good stuff. I couldn't believe the turn around in Zoe's weight. Since the sx in Jan, Zoe has been gaining about a 1 1/2 to 2 pounds a month and you should see the rolls on her! She doesn't miss a meal. I also couldn't get over the increase in activity and how she REALLY began to play with her toys. I thought before the sx that she was playful- NOTHING like now. So good to see. We didn't have to divert the fluid but it took a LONG time for it to stop. We stayed at MUSC for 3 weeks. We had a couple of other complications after the sx- she got a stomach flu, stopped eating, we lost 3 IVs in the middle of the night and ran out of places in her head to start more (she is an impossible stick in her arms)... it was bad but we survived. If you want to chat more... just e-mail me. I'm sure we can swap some very similar pictures! You will get through this with him and you have some very fun and happy days in your near future! Suzanne (mom to Zoe, 10 mos MDS) > > My son had his a/v canal surgery about a month ago since then we have > been readmitted to the ICU twice. During his surgery a lymph was nicked > and the fat from the breast milk has been leaking into the space around > his heart (chylothoracic effusion). This past monday he had another > opperation where they put a hole in the space arouond his heart so the > fluid drains into the space around his lungs, apparently the lungs can > handle the fluid better than the heart. They have also put him on > formula called portagen that tastes horrible and he throws it up. The > Dr's do not seem worried about the throwing up, but I hate seeing him > go through this. We are still in the hospital he has a chest tube in so > they can monitor the fluid. I am wondering if any of you out there has > any experience with this type of complication? > > Thanks, > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Hi I am so sorry to hear that you are having all this stress! I will see what kind of information that I can come up with concerning this and hopefully someone else here has some experience in this. Please know that I am praying for you and your baby. (you never told us his name!) Kristy shepherd_julie wrote: My son had his a/v canal surgery about a month ago since then we have been readmitted to the ICU twice. During his surgery a lymph was nicked and the fat from the breast milk has been leaking into the space around his heart (chylothoracic effusion). This past monday he had another opperation where they put a hole in the space arouond his heart so the fluid drains into the space around his lungs, apparently the lungs can handle the fluid better than the heart. They have also put him on formula called portagen that tastes horrible and he throws it up. The Dr's do not seem worried about the throwing up, but I hate seeing him go through this. We are still in the hospital he has a chest tube in so they can monitor the fluid. I am wondering if any of you out there has any experience with this type of complication? Thanks, - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Hi I sent your question to our advisory board as well as some of my doctor friends. This particular answer came from a doctor friend of mine who runs the Down syndrome Clinic at Texas Children's Hospital in Houston. I value her opinion and think that her advise is good. Kristy ************************************************************************** This is pretty common during heart surgeries. The chylothoracic effusion is actally a fatty fluid, that typically is absorbed in the body on a very minute level. The chest tube is very helpful in draining the excessive fluid. It is difficult, but, children will usually do quite well and recover very nicely. Children do better than adults, actually Nirupama S. Madduri, M. D. Assistant Professor Developmental-Behavioral Pediatrics Meyer Center for Developmental Pediatrics Baylor College of Medicine Texas Children's Hospital 6621 Fannin CCC 1530 Houston, TX 77030 nsmaddur@... shepherd_julie wrote: My son had his a/v canal surgery about a month ago since then we have been readmitted to the ICU twice. During his surgery a lymph was nicked and the fat from the breast milk has been leaking into the space around his heart (chylothoracic effusion). This past monday he had another opperation where they put a hole in the space arouond his heart so the fluid drains into the space around his lungs, apparently the lungs can handle the fluid better than the heart. They have also put him on formula called portagen that tastes horrible and he throws it up. The Dr's do not seem worried about the throwing up, but I hate seeing him go through this. We are still in the hospital he has a chest tube in so they can monitor the fluid. I am wondering if any of you out there has any experience with this type of complication? Thanks, - Kristy Colvin IMDSA President ____________________________________________________ International Mosaic Down Syndrome Association PH: 1- Toll Free: 1-888-MDS-LINK www.imdsa.com Quote Link to comment Share on other sites More sharing options...
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