Summary of Our Day

Has anyone else noticed a reoccurring theme in our lives, it's called hurry up and wait! That should be the title of this post. It has been a very trying day! Last night Lucy did well after receiving a 10% dextrose solution of IV fluids. This is a higher concentration than normally given. What I thought would be an overnight stay has turned into a several night stay. We learned yesterday that Lucy has difficultly fasting for long periods of time. She experiences episodes of hypotonia, generalized weakness, becomes more distant, and hypoglycemic. Lucy is not quite "back to baseline"but that is because she is extremely exhausted! As I posted earlier, we learned suddenly this morning after much confusion that Lucy would be getting her NG tube today. I was happy to hear that we were moving on this and at the same time was caught totally off guard! Yesterday we were talking about doing this on Dec. 8th during the time of her scheduled endoscopy/sigmoidoscopy these procedures have currently been placed on hold as well as the gastric emptying scan. Lucy is not "medically stable" to be receiving these procedures at this time. The information from the UGI was enough to convince the GI doctor that Lucy's anatomy appears to be fine and that placing the tube should be done today. After lengthy conversations about how to accurately quantify the amount of breast milk Lucy receives in a feed, and what Lucy's total amount of calories needs to be in the day, the GI doctor, nutritionist and Drew and I came to a conclusion on how to feed Lucy with the tube. I will not go into detail on that as it will only confuse me more tonight. So that took all morning, in the afternoon the tube was placed at 3:00, and we just started feeding her at 10:00 tonight! Now we wait and watch. She is sleeping now and aside from coughing every now and then she appears to be doing well. She will be monitored throughout the night.