Sunday, February 24, 2013

GFR and whatnot

Once again I find myself way behind on posts.  Oops.

You may have seen on our little Twitter bar over there on the right last week that Keegan had his annual kidney testing on Tuesday, a GFR.  A radioactive dye is injected into his bloodstream, and then blood is drawn at intervals over several hours to see how much of the dye the kidneys (or kidney, in Keegan's case) have processed.  Over the last two years, Keegan has stayed in Chronic Kidney Disease, stage 3 (CKD3).  We won't have the results for another week or so.  There are five stages of kidney failure, and we are hoping that Keegan will stay where he is for quite some time.

We also had a team meeting with most of Keegan's doctors.  Everyone was pleased that despite some major challenges to Keegan's immune system over the last six months, he has managed to weather each one without a major flare since August of last year.  Our main goal right now is to keep Keegan stable while weaning him off the steroids.  If he stays on the higher doses of steroids for much longer, it will cause permanent growth problems.  He already hasn't had any vertical growth in 18 months.  We don't want that to continue.  It is likely that we will have to increase his anakinra dose even more during the wean.  The remaining genetic testing will likely take at least six more months to a year.  And even then, we may not ever learn exactly what is wrong with Keegan's immune system.  One way or another, his doctors are trying to help him stay as healthy as possible while minimizing complications from over suppressing his immune system. 

The last thing going on with Keegan lately is continued electrolyte imbalances.  His weekly labs are drawn on Friday mornings.  Last Friday was yet another round of labs that weren't exactly what we wanted to see.  We are going to repeat labs again tomorrow morning.  If things are still not great, we may have to add another day of TPN or some IV boluses during the week.  He has been "off" emotionally for the last week.  It is possible that these behavioral changes are a result of electrolyte imbalances, but I guess we'll have to wait and see.

I think that's a pretty good wrap up of Keegan's world lately.  I have quite a few pictures to edit and post, including some of a few fun outings we've had in the last month.  For now, here's a few random phone pics to make you smile.

Happy Mardi Gras!

My two Valentines dates.
Gray was out of town, so we had a little mommy-kiddo date night.
It went very well until Audrey told the waiter he was "cute" and giggled like a preteen.
Oh boy, I'm in trouble with that one!

Entertaining himself with Mr. Potato Head on GFR day.

Princess of the Bathtub

Scootering on a sunny afternoon

 I never believed people when they said Audrey looked like me.
Well, I guess I was, circa 1986.

Keegan on a recent morning.
I was just struck by how grown up he looked.

This morning I ran the Cowtown half marathon in Fort Worth and finally was
able to carry my Beads of Courage.  
Pictured here are the beads I carried (above the number 3), along with one
of Keegan's 29 strands of beads.  He will keep one of the beads I carried today, 
and the other will be given to another child battling chronic illness.
I was honored to carry these today, and I am looking forward to continuing with the 
Team Beads of Courage program in the future.

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