I gave an update based off of what I knew when I left the hospital to spend the night with the boys at a hotel. After we left the official word came that the 2nd x-ray showed that the extra 10cm of tube still wasn’t enough. They did a 3rd attempt adding 4 more cm. Aimee ended up vomiting up her seizure meds and needing extra doses. By this time it was midnight and the team wanted to then start her on that 5mls an hour overnight. Ed refused and thankfully they respected that.
After a calmer night with some panicky episodes, the feed was started. Then the resident came in to tell us that they still weren’t happy with the placement of the tube. Feeds were stopped again. They are going to take her down to the IR(Interventional Radiology) in a couple hours and just put the tube all the way into the jejunal portion of the intestines. So instead of an ND it will be an NJ. This cannot be done at bedside, because it requires a fluoroscopy (like a video x-ray). We are trying to ensure that she gets at least valium beforehand. Ed and her nurse will be able to go with her to comfort her and due to her desat/turning blue with the tube insertion yesterday.
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We love to read your comments and encouragements! Messages to Aimee are always welcome too. I will definitely read them to her. :)
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