Hana had a good day yesterday. She spent a lot of time outside, not just with me. She had another vomit-free day. I actually took Hana and Poppy jogging with the stroller, which was very nice, although short (and crowded, because of the crowds headed to Golden Gate Park for 4/20). Today was another vomit-free day too.
We are having a real problem with her NG tube. The ports continue to pop open and contents leak. Sometimes when this happens, what looks like stomach contents, starts to pour out. Its almost like the stomach contents are pushing the ports open. She often fusses when this happens and I imagine she doesn’t find it too comfortable. Last night, 2/3 of her continuous feed leaked out onto her bed before I realized it. Maybe the decreased volume at night is why she didn’t vomit today. Still it is the longest we’ve gone without vomiting since she’s been in the hospital.
We are working with the case manager to find a different NG tube. Today we took out her old one and put in a new one. The old one had been in for 12 days, which really isn’t all that long but we are going to see if maybe it was just a bad tube (I’m very doubtful). I wish Hana would eat better and take the bottle, then we could just get rid of the NG tube all together. From the discussion boards on the Children’s Cardiomyopathy Foundation site, it seems this is a very common problem, so we are not alone.
Today we took Poppy to the park and had a nice walk. It was damp and chilly but it was still nice to get outside!