Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 Hi, everyone. My name is Akiko. We have 10 months old boy, Ryoto with CHARGE. We were at Children's hospital in Seattle for 4.5 months after he was born and he came home and he was doing fine (except couple of hospitalization due to pertussis, respiratory distress...). 3 weeks ago, he went back to Children's for his heart VSD repair and he is still in PICU. His heart surgery went very well but it took almost 2 weeks to be extubated and now he is on CPAP. He has bronchomalacia in his right lung and paralyzed left diaphragm so those make him difficult to breath. If he gets agitated, his bronchus tend to close, so they put him scheduled morphine and Ativan. He is getting better and they are trying off CPAP for a few hours a day. Hopefully he can get out of ICU very soon and come home. With bronchomalacia, is he always at risk when intabated? He has cleft palate and GJ tube (without Nissen), so at least palate repair and Nissen should be done in the future... Thank you, Akiko (Mom to Souma(4) and Ryoto (10 month CHARGEr)) Quote Link to comment Share on other sites More sharing options...
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