Our week of appts wrapped up on Thursday morning after meeting with the GI doctor and dietician. This visit was mainly focusing on his weight gain and calorie intake. The plan is for us to focus on him gaining weight over the next 4 weeks or so..every week after his nurse comes to weigh him I have to call and report his weight to the GI doc there. After he reaches his minimum weight of around 24-25 lbs then they will schedule his next appt about 3 months later. He will be going back and forth every 3 months or so from now on.
We have to meet with his Pediatrician this week to discuss his plan and get referrels to speech and behavioral medicine for Zach. They want him to be seeing both locally. When we go back for our next visit, he will have an endoscopy where they will take biopsies to see if his EE is in remission...if so we can start food trials via the allergist who we will also see...these will either be done inpatient or outpatient depending on how they go. During his scope they will also check for the celiac gene to see if that is a possiblilty and they will recheck all of his dissacharides..i.e. for the sucrose-isomaltase deficiency. He will also meet with their motility specialists to check for all his gastric motility issues to see how bad they are and find out what exactly is going on.
The only downside to Zach getting more formula right now is that he is vomiting more, we have to hook up his G tube to a farrel bag (venting bag) to release his stomach fluids and if we don't...he vomits. Poor baby :( Hopefully he will adjust soon.
Overall this week we had at CCED was very helpful, informative and crazy! Next visit will bring more tests and answers and maybe some foods. Until then we will work on getting him the calories he needs to grow!!
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