Posted (Tina) in All Posts on January-16-2009

Ella definitely has fluid on board. She was 8.66 kilos last week and increased to 8.93 kilos as of this morning. The ideal weight would have been 8.7 kilos. It simply confirmed that fluid overload is part of what is going on with her this past week.

The bummer is that we have already given her 1.5 mg of Bumex. Once we got the weight this morning, we gave her the other .5mg of Bumex. Now, she has had her max amount that we are allowed to dose at home. If she does not improve overnight and into tomorrow, we will have to contact the pulmonologist and ask for next steps.

This past week, we tried increasing the calories in her food to 28/kcal. However, when we were having all these problems, we opted to go back to 26 k/cal as of this morning. We were not sure if the density of the food was contributing to her fussiness and wanted to eliminate another variable. We may be able to try again, but it will have to be when she is in a better place.

She did seem to be in a little bit of a better mood today, so we’re hoping that we are on the right track. And we’re tired from this emotional week. So, we are praying that she sleeps tonight so that we can catch up on our zzzs too.