I've tried all my life to like puzzles. My mother loves them, I just don't have the patience for them. I am now living the puzzle Emma has put before us. I think we've got all the border pieces, but filling in the middle is proving difficult and frustrating.
So Emma's first medication, lasix, is not working as we found out yesterday. It is not removing the fluid in her heart and kidneys. They added the second medication. They did blood work today, which they have been watching while she has been on her medication. They check the sodium levels to make sure her kidneys are processing all the extra sodium they are receiving from her medications. In the blood work it also checks the function of the kidneys. It came back today showing that they kidneys are not receiving enough fluid. Which makes us thing we are drying her out.
This is where everyone started scratching their heads. We have been closely monitoring Emma's input vs output. Babies should put out the around the same amount they are taking in. In Emma's case, because we have her on all these water pills, she should put out more than she is taking in, because the fluid in her heart and lungs should be leaving her body.
For the last week Emma has been positive, meaning she is taking in more than she is putting out. By a lot. That is another reason they started the second medication. They don't understand why her test would come back showing her kidneys aren't getting enough fluid. If anything they should be getting too much. The pieces aren't fitting.
They decided to take her off her second medication for 12 hours to see what she does. If her output is positive 100cc's+ they are going to put her back on it and try again.
Emma was not eating very well today. Her doctor has her on a high calorie formula, so she can take in less volume and still get the same calories. Our goal was to help make feeding easier. Her doctors want her to drink around 50 milliliters a feeding (every 3 to 4 hours) When I left her last night she drank 70 mil. I was elated! It was the most she has ever taken in. When I came in today I found out 45 mil was her highest through the night. The last feeding I did today was 35 mil. Emma was eating every three hours consistently. Today she was going four. We are getting worse.
Her breathing has plateaued. She's definitely better than when she was admitted, but not improving.
They haven't been successful in removing the fluid with medication. At this point I can't see a time when we will come home before her surgery.