LauraElliott
New member
My son was born with a meconium ileus it was removed twodays after birth. The new born screening came back positive for Cystic Fibrosisa week after birth. He had 3 bowl movements. They started him on small feeds for about a week and then had to stop themdue to him puking and his stomach seemed to be getting firmer again. Thedoctor's suspected another bowel obstruction. They did a barium enema studywhich came back clean. His X-ray showed lots of air in him. I insisted they doan upper GI because I could tell something was wrong with my son. Sure enoughGI showed a problem. The surgeon believes Elliott may have a functionalblockage in his intestines. Things just weren’t moving through like theyshould. He gets TPN through his IV, which gives him all the nutrition he needs.
When I signed the consent form for Elliott to be operated onI didn’t hesitate. My motherly instinct told me something was wrong and Elliottneeded this surgery; that’s also why I insisted the Neonatologist put in anorder for Elliott to have the Barium enema and Upper GI study done. When Iinsisted on these things happening I didn’t know what to expect. I didn’tprepare myself, but then again how could I have prepared myself.
The surgery is really hard for me to discuss. It’s extremely hard to put intoword because there are so many details. Basically they had to remove a good portionof Elliott’s small intestine.
He came out of surgery with something called a double barrel. His intestinesare poking out of his belly one is called a mucus fistula which is the sidethat goes to his colon. The other is called ileostomy which is coming from hisstomach so he won’t be pooing until he is reattached. Right now he has anileostomy bag. They are allowing him to eat one ounce every three hours and heLOVES to eat and wants more every time.
His surgery to be reconnected is this Thursday! Two daysaway… There has been talk to Elliott possibly needing a G Tube. It would beused for night feeding. I’m stuck on what to do. I feel like Elliott should begiven the chance to take to a full feeling and see if he gains weight withoutthe IV running with TPN. I have four doctors involved in Elliott’s care twothink he should just get the tube now and two agree with me that we could waitbecause there is a chance he could do just fine without the tube. Elliott isnow almost 3 months old. I need advice. Please help.
When I signed the consent form for Elliott to be operated onI didn’t hesitate. My motherly instinct told me something was wrong and Elliottneeded this surgery; that’s also why I insisted the Neonatologist put in anorder for Elliott to have the Barium enema and Upper GI study done. When Iinsisted on these things happening I didn’t know what to expect. I didn’tprepare myself, but then again how could I have prepared myself.
The surgery is really hard for me to discuss. It’s extremely hard to put intoword because there are so many details. Basically they had to remove a good portionof Elliott’s small intestine.
He came out of surgery with something called a double barrel. His intestinesare poking out of his belly one is called a mucus fistula which is the sidethat goes to his colon. The other is called ileostomy which is coming from hisstomach so he won’t be pooing until he is reattached. Right now he has anileostomy bag. They are allowing him to eat one ounce every three hours and heLOVES to eat and wants more every time.
His surgery to be reconnected is this Thursday! Two daysaway… There has been talk to Elliott possibly needing a G Tube. It would beused for night feeding. I’m stuck on what to do. I feel like Elliott should begiven the chance to take to a full feeling and see if he gains weight withoutthe IV running with TPN. I have four doctors involved in Elliott’s care twothink he should just get the tube now and two agree with me that we could waitbecause there is a chance he could do just fine without the tube. Elliott isnow almost 3 months old. I need advice. Please help.