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.

Aimee N Santa Monica on January 16th, 2009 at 10:35 pm #

I hope you get good zzzzz’s My baby line has a cute zebra getting her zzzz’a on cute jamis. I will have to give Ella some the next time I come to Denver. Love, Aimee

Jim and Char Jordan on January 16th, 2009 at 11:14 pm #

Blessings on a good nights sleep. Things always seem easier to handle when you are rested. Our prayers to you and Ella girl at this once again difficult time of change.


Joel Snyder on January 18th, 2009 at 12:13 am #

Ella, Hope you are feeling better and can get some rest. I am a day late with this post and will catch up with you tomorrow. Love,Grandpa!!!!!!!

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