Aug. 1-Today's Update

If you've ever spent any time in a hospital, you know that time doesn't always mean much.  Though we were scheduled for dialysis this morning at 6am, they had a hold up with the blood, so we got bumped.  They came in and did it around 1.  They did another 90 min. treatment and he did great.  He is still feeling pretty slow and weak, so he just lay there through the whole thing.  His soreness from the catheter placement is much better, so its nice to know he's not in pain.  He was low on red blood cells, so he was pretty pale and worn down.  Since the dialysis, he's perked up some and has a little color back in his lips. 

While they were getting the machine set up, we were talking to the Dr. and getting to pick her brain a little bit.  Of course, she said that the T T thing is great! That means only good things they say!  His numbers still indicate that he is very sick and we can see that in him.  BUT they totally expect that.  The idea with this isn't to get him back to normal in record time. She said that with HUS, they can't fix the problem.  Their job is to support his body so that his body can recover on its own.  The dialysis and blood transfusions are the ways they support his body.  The dialysis helps his body stay safe and out of dangerous levels, but it can't just suck out all the bad and be done.  His body would freak out.  So they do things slowly so that his body can adjust and begin to heal and start working on its own.  That made sense to me as far as why this is such a long process.  All signs point to the fact that what we are doing is working and he is responding well to the treatments.  The pee proves that his body is beginning to function some and we look forward to seeing more signs of that.  When we see his platelet count go up, that will be another big sign that his body is beginning to take over.  We are hopeful about his recovery, no matter how long it takes.  He has quite the appetite and his nurse told Kory today that she has never seen a kid eat so much so soon with HUS.  HAHA!! If she only knew the drama his eating history had been. 

We are so proud of Kanyon he is SUCH A STUD.  We are heartbroken that he is so sick and that he has to go through MORE yucky stuff.  But being in a place like Children's Hospital, it doesn't take long to look around and realize how much worse it is for so many other people and how thankul we are that Kanyon's chances for a full recovery are so good. 

We are always aware of the prayers being offered for us and can't thank you enough.  There is no way to communicate what that does for our spirits, our energy level, and our hearts.  Thank you! 

Here is a picture of KLP feeding klp after his dialysis.  klp was STARVING and he was devouring a sandwich.  I told klp to say "cheese!" and this was the best we got.  I guess this is his HUS-sick version of his cheesy smile! :)