Friday, December 27, 2013

Christmas at Primary's

2 days after Christmas we made the trip again to Salt Lake for Austin's appointment at Primary's.  It was a fairly routine clinic visit except that once again we had to us TPA to get Austin's port to draw back blood.  It's so frustrating because it means extra time waiting around.  We were told we will have to see how the port continues to function but that it is an option to remove the port and just start a regular  peripheral IV each time Austin needs Chemo.  This isn't ideal because the chemo is very caustic on veins, but it would eliminate the worry about a central line infection.  We will see.. Austin wasn't thrilled about the idea of starting an IV each time and I don't want to ruin all his veins with Chemo.  So we will keep that in our back pockets and wait and see.
The drive to Salt Lake.  These kids are pros!

Getting assessed by Dr. Eldridge

Yep, he's bored

Waiting for his Port to work

Off to La La land

Waking up
Austin got his Lumbar Puncture and Chemo and we made our way home.  Austin has completed 3 rounds of maintenance and has 8 left.  So far to go...but he has become accustomed to this new "normal".  Other than these appointments that interrupt our routine and the daily pills he takes, for the most part we are not bothered too much by the big "C".  It lurks in the background, especially in my mind but we are taking one day at a time.  Austin is healthy right now and for that I am very grateful.

Wednesday, December 25, 2013

Merry Christmas 2013!

Merry Christmas!  We had a wonderful, quiet holiday.  Nothing fancy, no traveling, pj's all day.  It was great.
Meeting Santa

Gingerbread houses

Christmas Eve

Christmas Morning

Disney Infinity...Austin has been begging and begging for this.  It's what he asked Santa for.

Monday, December 2, 2013

Checkup and more TPA

Another checkup with Dr. Marsden.  Austin is doing well and feeling good.  No illness to report.  Unfortunately, the home health once again was not able to get Austin's port to draw back blood.  So after the checkup we headed to the Peds floor for TPA.  Dumb port.  I hate it when it doesn't work right.  I know this is "norma", but I still worry and worry about what it's doing inside his body.  I hate that it is so close to his heart.  After about an hour of TPA, the nurse was able to get blood.  The labs were sent off and we went home.

My silly boy...playing around while waiting for Dr. Marsden

Trying to get the port to work

Just because you are in the hospital doesn't mean you get out of doing your homework!