Hi, my son is 15 with cf ( will be 16 in 2 weeks) and has autism. He is still having a hard time gaining weight (he currently weighs 69 lbs) and his cf doctor sent us to see a gi that specializes in cf(both from Childrens Hospital of Pittsburgh) to discuss a g-tube. After a very thorough 1st exam the doctor concluded that Jacob is not a good candidate for a g tube but will need a gj tube instead. He feels that jacob will need continuous feeds lasting most of the day instead of just overnight.
I must admit I was completely caught off guard and was not able to think of questions that I of course am thinking of now. I was hoping if there are any parents on here that their child has this type of tube if you could tell me your experience. Like how painful is it, how often does the tube have to be changed, how do they go about their day when they are hooked to a tube or anything else you can think of . They said my son will have to be in the hospital for about 5 days. Jacob will have a ct scan on Tuesday to check to be sure there is not any chrons going on too. Thanks in advance any info will be greatly appreciated.Janelle
I must admit I was completely caught off guard and was not able to think of questions that I of course am thinking of now. I was hoping if there are any parents on here that their child has this type of tube if you could tell me your experience. Like how painful is it, how often does the tube have to be changed, how do they go about their day when they are hooked to a tube or anything else you can think of . They said my son will have to be in the hospital for about 5 days. Jacob will have a ct scan on Tuesday to check to be sure there is not any chrons going on too. Thanks in advance any info will be greatly appreciated.Janelle