Nowhere
11-05-2007, 21:54
just thought we would introduce our selves and see if anyone else with simalar issues
Kenzee is neally 14 months old she has maor gastric disorders which are servere Gastro osophagil reflux disease (yes reflux but beleive me when i say there is more to reflux then meets the eye) delayed gastric emptying and bowel dismotility, which basicly means she cant tolerate feeds at all she has had an operation done to stop the reflux butit can only doso much, and becuse of her DGE she still cant tolerate bolus feeds at all not even 20mls at a atime so she is fed 100% through a nasogastric feeding tube no solids no water nothing oraly , unfortunatly it seems that she still isnt tolerating the continuos feeds sehis still gagging ratching and in loads of pain so we are now looking at achanging ehr NG tube to a jejunal tube which is one the goes into the the intestines and bypasses the tummy all together hopefully with that she wil start to grow and not be in pain she is only 6.7 kilos at almost 14 months old so she is pretty tiny, we they are also going to do a test for herchbungs disiese next time she is in theretre bacuse she is un able to have a bowel motion with out the aid of an enama or a lot of laxatives it may just be down to tehr bowel issue but its best to rule out herchbungs just incase, we are praying she dioesnt have it obviuosly as it would mean another operation for her wich would suck
she has already had 2 on her tummy and 2 on her throat for laryingomalacia
kenzee also has hypertonia she is like a rag doll and i mean that in the most indearing way she is beautyfull she has been given a walking frame to try anf get her to strenthen he legs and ankels but she isnt interested in it at all
They aer now looking at doing some neuro testing on her due to the serverity of her issues but at this stage we are just wanting to get her healthy and growing first
Kenzee is neally 14 months old she has maor gastric disorders which are servere Gastro osophagil reflux disease (yes reflux but beleive me when i say there is more to reflux then meets the eye) delayed gastric emptying and bowel dismotility, which basicly means she cant tolerate feeds at all she has had an operation done to stop the reflux butit can only doso much, and becuse of her DGE she still cant tolerate bolus feeds at all not even 20mls at a atime so she is fed 100% through a nasogastric feeding tube no solids no water nothing oraly , unfortunatly it seems that she still isnt tolerating the continuos feeds sehis still gagging ratching and in loads of pain so we are now looking at achanging ehr NG tube to a jejunal tube which is one the goes into the the intestines and bypasses the tummy all together hopefully with that she wil start to grow and not be in pain she is only 6.7 kilos at almost 14 months old so she is pretty tiny, we they are also going to do a test for herchbungs disiese next time she is in theretre bacuse she is un able to have a bowel motion with out the aid of an enama or a lot of laxatives it may just be down to tehr bowel issue but its best to rule out herchbungs just incase, we are praying she dioesnt have it obviuosly as it would mean another operation for her wich would suck
she has already had 2 on her tummy and 2 on her throat for laryingomalacia
kenzee also has hypertonia she is like a rag doll and i mean that in the most indearing way she is beautyfull she has been given a walking frame to try anf get her to strenthen he legs and ankels but she isnt interested in it at all
They aer now looking at doing some neuro testing on her due to the serverity of her issues but at this stage we are just wanting to get her healthy and growing first