Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 Does anyone here have a port ? Braden's hematologist (who's office gives him his monthly IVIG infusions) wants him to get a port. Braden has been blowing his IV lines frequently. He is no longer on TPN- he has 3 permanent occlusions- in his right subclavian, and both his internal jugular veins. His liver was rapidly failing (long before omegaven was around) and although he was not ready for gtube feeds, his doctors saw getting off TPN asap as his only option until he could get a liver/small intestinal transplant. Well he hasn't been transplanted..yet and I am optomistic that he may not need to be ??His PSC is not active right now with his IVIG and vanvoycin treatments I am concerned about several things 1) can he even get a port if he has lost access except in his legs ? would he have a big 'lump' in his leg ? 2) do they hurt if they get hit/bumped ? Braden is very clutzy and has a history of falling and doing strange things- things you couldn't ever anticipate and hurting himself somehow in everyday situations. It doesn't help that he has been so B12 deficient for so long (that we were not aware of untill recently) that his hands shake, his balance isn't good, his body awareness is terrible... 3) does it hurt when they access the port ? 4) if he has had so many problems with occlusions- could it happen with a port too ? 5) how long are they good for ? Braden will very likely need monthly IVIG infusions for the rest of his life thanks for any advice or tips you may be able to offer Lori lucky mom blessed with triplets www.caringbridge.org/visit/bradenwild Quote Link to comment Share on other sites More sharing options...
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