Guest guest Posted April 6, 2005 Report Share Posted April 6, 2005 Hello all I read all the posts and thank you all for the wealth of information! We had our appointment yesterday and I am still reeling. Jasmine has had 7 procedures including a lap Heller in January 2002. She cant eat anything solid or fibrous and need to bounce on the trampoline even to get fluids down. She is suffering from reflux, she describes it as "grit" in her mouth, mainly in the mornings(If she does not have 20 ml of gaviscon before bed) she does sleep with a wedge and a triangle pillow. Our consultant agreed this is no good for jasmine as it affects her quality of life. She is 9. What he suggested has scared me to death, he pointed out, correctly that nothing we have tried has really made a significant improvement and so he thinks she needs a cardioplasty with a wrap (open). is this really a second myotomy? he said he really did not need a barium, I don't agree what do you think? If we go ahead with this it will be in July (school holidays) in London, we live in Birmingham. He said it would be 7 - 10 days in hospital, we could go private as we would have a family room. (My 7 year old will not be separated from us). What I am most worried about is the long term solutions, Jasmine is 9 - her oesophagus has to last a long time, or at least until a replacement is available/invented! I wish it was me, making the decisions for a child affects their whole life, its such a burden. I found a great web site about this operation www.scielo.br/scielo.php? I dont know how to do links, but it is quite a good report. Its adults of course, I cant find anything about it for children. sorry i cant share more poitive information for you all! may be one day! Tamworth UK Quote Link to comment Share on other sites More sharing options...
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