It took us awhile on the Omegaven. After 6 months we are now at 0.6 direct and 1.1 total. Got up as high as 8 direct and 14 total. Don’t be worried if he goes back up. We did great for the 1st 3 weeks and then went backwards. Now we are on a good track. It makes such a difference in their personalities, when they feel better they can do so much more. We started 2 days after Zachary’s 1st birthday. Wish we would have begun earlier but can’t change that now. Since the O he has been gaining weight, learning to walk and has a better appetite.
Zachary had 6 cm left no valve but full colon. Our last tests look like it has grown. We are discussing putting in a G tube but not sure about that yet.
We are on elecare, only with banana flavoring, taking about 30 - 60 cc at a time but throughout the day maybe 8 oz total. Food by mouth is slow but our doc said give him whatever he wants. One mom told me no more than 5g of sugar per serving for any food so I have been trying to follow that. Zachary never liked baby food.
We do a lot of cheerios, whole grain waffles, did like yogurt for awhile but not anymore, egg yolk, noodles…I have a little carbohydrate junkie.
No water, he only gets elecare or pedalyte to drink. Does like ice chips.
We have a little kids backpack that we use during the day and recently he has a spiral extension to his TPN. He is now on for 16 hours a day so it makes it much easier. That crazy pole is from 8p to 8a so much of it sleeps though. I will look for the name of the extension. Our infusion company was not familiar with it. Yuko, one of the moms on the short bowel site had it for her son. It is a godsend! Allows him to crawl around his entire room and have slack. When Zachary was smaller we dressed him in PJ’s all day. They were the ones that snapped down the front. Just seemed to keep the fingers away from the cords.
Today was the 1st time I ever noticed him move his cord out of the way when he wanted to go somewhere. He was standing and it was on his toes, he picked it up, swung it over and then went about his business.
Where are you being followed? Where are you getting the Omegaven? We have been at Pitt listed for Transplant but now that Zachary is doing so well I want to really work on the rehab. Transplant is very scary.
What city are you in? We are in St. Louis MO.
Take care, look forward to hearing from you