Thursday, December 11, 2014

Emma & the Kitten & Weekly Infusion

I'm grateful for many things, and here are two of them:

(1)  That Emma lived to get the kitty that we promised she would get once she got home from transplant.

(2)  That the kitty is super snuggly.  Most of the day he hangs out like a doll...wrapped up and snuggled or held in someone's arms most of the time.  He doesn't try to get away (usually...and if he wants to go, we make them let him).  I just don't know if we could have gotten a more perfect little animal addition to the family.

Burmese cats are awesome.

(Even if I don't really enjoy it when he wakes me up in the middle of the night...or when he climbs in the fire place...or sticks his nose in all our cups...haha.  But, it's worth it to see how happy the kids are!)

Emma was laughing because she thought he looked mad.  But, he didn't struggle or try to get up at all! haha!  Made all of us laugh.


Today Emma had her weekly infusion of cidofovir.  She's been having this since May or something.  It's to try to kill off the BK virus because it was messing with her kidneys, making them pull liquid from her system constantly, even if she hadn't drank anything it was still pulling liquid from her system, making her at risk for dehydration quickly (she was always guzzling water like a crazy person to try to keep up with what her kidneys were doing!).

So, that part has improved, but the BK virus is stubborn and still hanging around.  The numbers are down to about 150,000 from 268,000,000.  Her BK virus had actually gotten down to 140,000, but it seems it went up to the 150k, and it seems to be struggling to get lower...or go away.

Her BUN and creatinine still fluctuate up and down, which were also signs that something was going on with her kidneys.  It's minor, though, so we don't really worry much about it.

Emma seemed to feel a little off during some of her infusion today.  Her nurse always checks her temp and blood pressure and O2 stats regularly during it.  So, I decided to be a paparazzi and take some photos during it one time:

That little "ball" that Chris (nurse) is touching with his left hand is what holds the medication and goes inside through her port on her chest.  First she gets a lot of saline for about 1.5 hours, then he hooks her up to that thingy.  It's nice because she's off of the IV pole when that is running for about an hour.  But then she has to get lots of saline after for about another 1.5 hours...putting her back on the IV pole.  The saline is to try to protect her kidneys from the toxicity of the medication.

If you ever wonder what goes on with the other kids in the meantime, here's what they did today:
- painted nails
- painted toe nails
- wore playdoh as beards and mustaches

When the nurse left, the kids got some little candy canes for their wonderful behavior (I say that a touch sarcastically, as they get a little stir crazy during the whole ordeal!).  And, it was dark and overcast, so we went on a walk...with hopes that emma wouldn't burn.  Emma's pink jump suit was a gift during transplant from a family, and she wears it over her normal clothes to keep her warm.  hehe.

The boy...that needs a haircut...

Just because they are cute:

 Looking in our backyard actually:

Emma keeping hold of Ella since the street was a little busier than usual, and I have this paranoia that Ella will trip and fall and land in the street.  You can't see it very well (you can in a larger photo), but Ella's hair is naturally in ringlets:

Violet got cold, so Emma gave her the coat she had brought for herself, just in case she needed it.  They all walked hand in hand and/or side by side for quite a while (I had hold of Ella).  It's moments like these where it stands out to me just how much these little people have gone through...and continue to go through.  I hope it's a bond that lasts a lifetime.

These little people are my whole world.  I'm so glad I get to spend my days with them.  Sure, it'd be nice if we could spend our days in social settings now and again, but those days aren't now...maybe soon in the future.

I love you, my babies.

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