Maddy has been having some hard times with the new feeding tube that she got when she was hospitalized over the weekend. They had her getting bolus feeds (a fairly large amount over a short period of time) during the day and then continuous drip feeds all night. She was doing okay with that, although not liking the day feeds a whole lot. She also hasn't done very well with the heat, and has been resisting taking anything by mouth all day, so we have had to do almost all of her feeds by tube. The doctor was concerned about her not eating and that the heat was what was stealing her appetite.
Today she also started crying all through the bolus feeds. The third feed, I went to check the placement and couldn't get "pull back" to make sure it was still in her stomach. The dietitian at Apria couldn't verify it either, so we went into the feeding clinic. They could verify it was in the right place, but when we started the feed, she started screaming again. So, they put the rate down to what it is when she is having the continuous drip at night, and she calmed down.
So, for now she is on the continuous drip 20 hours a day, and she can eat from a bottle if she wants, but she doesn't have to. So far she hasn't been willing to take anything at all. All day she has taken less than 2 ounces by mouth. We meet with the full feeding clinic specialty team tomorrow afternoon, and they will decide what to do at that point. They will for sure change the feeding tube, and I will get more training on how to do it. They will also talk about what feeding schedule makes most sense, whether she needs to be admitted, and we will talk about whether it is time to put a direct feeding tube in that would be put in surgically and would go directly into her stomach.