Update

Xander is hanging in there.  They tried turning off his epidural this morning, but within hours he was crying (screaming) and pretty inconsolable, so they started it back up.  We'll try again in the morning.  His foot and ankle are very swollen, and he has had a fever off and on for the past few days, so there is worry of an infection.  However, the docs are hoping that the fever is just from being in bed and not exercising the lungs (so we are now doing bathing exercises every 20 min) and that the swelling is just going to go down on its own with added compression.  I hope they are right!! When Xander doesn't have a fever, he is in pretty good spirits.  A couple of hours ago we got him out of bed for the first time and put him in a wheelchair.  He LOVED pushing himself while I wheeled the cart hooked up to all his tubes.  He has his epidural, IV, vac, heart monitors, and two drainage tubes coming out of his leg.  All kinds of fun!  We went to the playroom and made silly putty, played with dinosaurs, and raced cars.  He was the happiest I've seen him since Monday morning.

I will admit that this has actually been an easy few days for me!  I just sit around and watch Olympics (when I can convince Xander to turn off cartoons), help and play with Xander, eat, and read magazines.  As long as he's not too miserable, it's actually almost like a little vacation.  It's been way harder on my kids at home who are taking care of each other and the house, and on Jeremy, who is balancing work and home.  In a couple of hours he will be coming to switch me, and then I get the tough job for the night.  At least it comes with a shower!!

Primary Children's is a special place.  I have been here for minor things, major things, and in-between  things like this one.  I am so grateful for the amazing staff and volunteers that help make time here as easy as possible.   It is truly a incredible hospital. Xander has already racked up all kinds of little goodies and crafts to take home with him.  (:  That being said, I can't wait to get back home to normal.  Well, our normal.  Which is not-so-normal.  But you know what I mean...

Thank you for your prayers!  

Christianne

Christianne