Wednesday, March 27, 2013

Jae on schedule for MIC-key button

Poor Jae can't get a break. She has been recovering from illness after illness for the past 2 weeks. For 9 days she had a head cold. She was pretty much over it for one day, then the next night got the stomach flu with vomiting and diarrhea for 3 days. I thought she was finally over it last night, so we started her on her new medication, 6-MP. I guess she wasn't quite over it, because she had to stop her feeding during the night due to abdominal pain and nausea

Last week we were pleasantly surprised to find out that Jae had gained 2 lbs. This week we find that she has lost them again.

Anyway, it is time for her NG tube to be removed. It seems pretty clear that the enteric nutrition is doing her good, even if she hasn't reached remission. She is only one week from finishing her 8 weeks of exclusive enteric nutrition, but will need to continue supplemental feeding. Today we decided that since replacing her NG tube each month isn't going to work well for her (won't do it without sedation), that the best option for her will be to get a MIC-key button. I think it is being scheduled for Monday for placement.

Oh, and poor Jaedyn got two vaccines today... pray she doesn't get seizures, we've often wondered if vaccines were a trigger for her seizures in the past... now I'm more convinced the seizures were triggered by malnutrition...


  1. Oh my, so sorry. That has to be so hard. I hope that the MIC-key button works well, and that the vaccines don't trigger seizures. Praying for her and you.