Motility issues Hospital stay (long)

[Guest guest]

Lori Anne You know I thought I saw you in the coffee shop one morning last week when the boys were inpatient but I was in a daze and it hit me later.....Oh I think that was Lori. Really tired lately obviously. I am very very sorry about the worsening motility. I am not sure I followed your tube system but I get the gist that things have not been good. I don't know that I would put too much stock into whatever doctor predicted that Lucas would never do better. I am quite sure no one ever thought that he would be able to tolerate g feeds as well as he did the last few months. I was told something similar about zach many years ago and he ended up proving them wrong. They just don't know so please do not give up hope. On the other hand - what I have seen after almost 12 yrs of motility issues with Zach is that there are bad times and good. Right now Zach is not able to tolerate anything - all his calories are intravenous. 6 months ago 35% of his calories were in the jejunum. 3 years before that it was all IV. WE do what we need to to keep him healthy but try to not ever give up hope that things will get better. However, having said that, I am sure you feel very disappointed and defeated right now after all he has been through. Hope things get better. Annewww.caringbridge.org/wi/zachsam