Wednesday, May 14, 2014

cidofivor

If you've been following us on Emma's Facebook page (www.facebook.com/ourlittletasteofheaven), you'll already know that Emma's kidneys have shown signs of dysfunction.  She has conjoined kidneys.  So, if one goes, they both go.  

Transplant is hard on the liver and kidneys.  When there was the option, and since she has conjoined kidneys, they always opted to save the kidneys and harm the liver (if there was no way to protect both).  Her liver numbers are still elevated from it all, but her kidneys had been good up to this point.

Meanwhile, her BK virus levels have made it up to 170 million.  The doctors are pretty sure that her BK virus is causing the kidney issues.  But, even if they aren't, her levels are high enough that she needs treatment.  So, they wanted to start her on cidofivor...which we did today.

The only downside to cidofivor is that it can cause kidney damage.  Nice.

It took four hours.  And when you are in a room for four hours, and you like to take photos, you end up with a lot of photos.  I'm only posting maybe 5% of them?  haha...

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First, they access Emma's port.  They spray it with some cold spray to numb it.  Then they clean it.  Then they insert the needle.  Then they add the dressing.  It is quick and easy!  She has a port under her skin (kind of like a big circle with a flat top), which always has access to her vein, so they just have to poke through her skin, to get to her port.


They start with a lot of fluids.  It was maybe 200mL over 1.5 hours.

Then the cidofivor came in this bag:


Do you like how she's looking at me?  If you look at the IV pole, there is a little bag up top (cidofivor) and then the saline in the big bag under, which ran with it (or appeared to from what I saw).  The medication ran for an hour.  Then she had another 1.5 hours of fluids.

 She was making the face above, just to be funny.  And the face below, obviously to be funny:


Yes, she is capable of normal expressions.  And, in case you're wondering, those random-seeming-feet DO belong to Emma.  They weren't someone else's that were left in the seat or anything...

And, some more funny faces:




 
I did not notice the food on her face until I got home and looked on the computer.

It looks like she is relaxing, but her legs are sticking out in the air - nothing is under them.



She did really good.  She didn't seem to feel any side effects at all. We have no idea how it'll affect her kidneys...hopefully only for good!

She was down a pound again this time.  Not sure what's going on with that!  She's a good eater!

She'll have this drug every week until symptoms are better and virus levels are...not sure.  I'm not positive what they will require.  :)

Emma wanted me to take photos outside, especially of the sky...so here you go:

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