Thanks for getting back to me so quickly. I am familiar with the j/g feeding tube. Conrad had several one years ago. Conrad had sever weight loss (wasn't big to begin with) after his posterior spinal fusion. So the doc placed one, over time he was able to transition to a peg then a mickey button (which is what he has now). We aren't able to run the pump very fast and even at a slow rate he still blows up like a beach ball. I have talked with the GI doc on numerous occassions as well as his respiratory therapist but so far we have not been able to solve the problem. He gets pretty bad air pockets in his intestines which take all day to work through his gut. I am very curious to learn more about the suction you are referring to. I vent his peg a couple of time through out the night, are you doing something more than venting? I appreciate any suggestions you have.
I would definitely like to know who the other young man out here sees for his GI stuff, hopefully it is someone different than who we currently see.
I would be happy to exchange phone numbers and talk by phone if you are interested in that. Hard to cover everything in email messages.
I will email you my contact info. Have you solved the bloating problem your son was having? That is also one of our GI issues. We have adjusted the pressures on his BIPAP machine but did not help... Just wondering what you might be doing?
Thanks for letting me kow about the mda chat on Wednesday, I will try to make it. My son is a senior in college this year so things are a little hectic sometimes. I would welcome the opportunity to talk with the other parent who has a 27 year old son that lives in Seattle, I am looking for a couple of specialists (GI doc and a Cardiologist) for Conrad and would like to know if she is happy with her son's providers and maybe willing to share who she takes her son to.
Does your son have any GI issues?
We do have great friends and neighbors. My husbands family is a great support, but they live in another state, so we can't rely on them very often to give us some respite. My family is not entirely supportive and guilt comes into play when we ask them for support. We rely mostly on our good friends and neighbors. They are always there for us and we are truly blessed by that.