[ Post a Response | Cat Eye Syndrome Interest Board ]
Posted by Lisa
on 10/27/2004, 8:51 pm, in reply to "Feeding Problems"
68.2.55.2
Hello! I have a 4 year old, he has Trisomy 22, which is different from CES, but I thought I would answer because he also had heart surgery and we dealt with the same issues with the feeding! He actually had 3 heart surgeries. He stopped eating by mouth after both the 1st and the 2nd surgery. I am part of a local group for families with heart defects and have actually found that it is not uncommon for children that have had heart surgery to have feeding issues. We just kept at it and gently tried a bottle first with each and every feeding, before doing a tube feeding. After the first surgery we did the NG tube and eventually he did start feeding again. It did take alot of dedication on our part, as well as some help from a speech therapist. After the second surgery, we decided to have a g-tube placed because the NG was so unpleasant and we figured we'd need it again because we knew he needed the 3rd surgery. With lots of encouragement from us (and speech) he did start eating again, though he did require some supplementation through the tube. We were actually quite happy with our decision to do the g-tube because it seemed to be sooooo much more comfortable for our son, and we believe that the having the NG down his throat was actually contributing to his unwillingness to eat. Anyway, he just had his 3rd heart surgery last month! This time he stopped drinking, but he has actually been eating MORE! (he takes pureed foods by mouth.) The g-tube came in quite handy for providing fluids. He refused to drink the entire time he was hospitalized at during the time we were in the hotel and RMH (we were out of state), but once we had been home a week or so he's slowly starting drinking again. For the moment we are still supplementing through the G tube. Anyway, I hope this is helpful! ~Lisa.
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