Friday, June 24, 2016

Still Praying for Pee

The last week has been hard on us all. Avelyn was placed on a mechanical peritoneal dialysis machine last Thursday, which was the day I had to leave to return to work. Sean and I had our doubts from the get go as it seemed to not be pulling as much fluid off as the manual set up. As the days wore on the situation got worse. Every time I called the nurses or talked to Sean she was more and more fluid overloaded. By Monday she was really showing changes clinically and wasn't urinating at all. It was bad. So the cycler was abandoned for now. We may try again when she stabilizes more, or they might find a different cycler that will work better for her but in the mean time she'll stay on the manual set up. 
It's believed that she quit peeing because the cycler wasn't allowing her to fully drain her peritoneal cavity before refilling her with another round of dialysis fluid. This caused her to retain more and more fluid which eventually compressed and stressed the kidneys too much. 
The nephrologist ordered a renal ultrasound just to make sure Avelyn didn't have any acute renal changes. The results weren't good. Avie's kidneys are shrinking and have been since at least March. The shrinkage is significant. We were hoping to see signs or renal recovery by now, so the findings are devastating. The shrinkage could be due to her kidneys being very inflamed in March and that receding then scaring over. She could still recover some function of her kidneys, the left one looks a bit better off than the right. 
Either way these findings have hit us hard, especially because it coincided with Avelyn not producing urine for a couple days and with her renal labs looking worse. 
However, we'll hang onto hope because that's really all we can do. There's nothing to be done for her kidneys but to provide her time and pray they heal and regain some functionality-it could take a year or more to truly know how much of her function will come back-if any. However in a few months time, they'll get another renal ultrasound that will be able to show further shrinkage, stagnancy, or growth. We also have to pray that she remains cardiovascularly stable during this time as she cannot afford a heart cath with sick kidneys. It's the riskiest waiting game I've ever played. We're basically gambling her organs against one another. It's a terrible corner to be trapped in and Avelyn's life and quality of life are at stake. It's awful.
More has happened, but I'll try not to sulk about this weekend as much as I did last week and post another update soon. Best wishes to you all. Please keep the peepee prayers coming. She needs them more than ever. 

No comments:

Post a Comment