A Super Day

 Tiernan tried out some cool Batman jammies today.  I think Dr. Hanley also stretched him while in the OR because the shirt is tooooo small. 

 Oh.  And I think this is the smile of a boy who doesn't need that annoying CPAP anymore!  Woohoo!  He has already weaned down to 4 on the high flow canula too.  Which means that he could just as easily be on regular O2 now.  I think tomorrow would not be a crazy goal for that.

And then THIS happened!!!!!! 

He got special clearance from Dr. Purkey to go off floor, and out to the fountain!!!!! 

And to the super rad electric train!   Unfortunately it is Sunday though, so it wasn't actually running.

 But he was definitely willing to get out and check out the underwater bit (my favorite part).
Tiernan still isn't a giant fan of walking, but he PR'd once again and did not one, but TWO walks today.  The first walk he went all the way to the far doors (that was his PR from yesterday) and then back around to the door on the other side of the CVICU and then back to his original room (which is 2/3rds of the way back to the far doors) and then back to his current room.  That is about 6 times farther than yesterday.  His second walk was a bit shorter, maybe half that distance, but he was probably still worn out from the earlier marathon.  PT will be so proud tomorrow!

Obviously things are going pretty well today.  He even got freedom from the IV pole.  No more constant drips.  The only IV stuff he is still getting is the Bumex (diuretic).  They can just hook him up for that intermittently.

His eating and drinking resulted in his fluid balance being the best it has been in many days.  Go figure.  He finished last night by dining on Spaghettios and felt great.  This morning, however, we tried scrambled eggs and he took one bite and threw it up.  I think it was a texture thing primarily, but his tummy may have also just been a bit touchy that early in the morning.  By lunchtime he was ready for more Spaghettios and blueberries.  He is drinking milk like a champ but also wants a lot of water.  Unfortunately his sodium levels are a bit off now though, so the docs have said no water for awhile.  They really want him to drink juice or Gatorade or Pedialyte or soda.  But he refuses all of that.  Normally I am very happy about this, but today it would be helpful.  Oh well.

The unofficial echo results are that the repair still looks great.  He still has a diastolic and systolic murmur.  I got some clarification on what that actually means.  The diastolic has to do with the filling of the LV.  So there is a murmur through the Mitral Valve which is a tad smaller than average.  On the last echo it showed a slight increase in the gradient since surgery.  (was 5, had gone up to 7-11)  This echo showed it down to a 5 again.  That is fantastic because it is the same as when Hanley finished in the OR and he was happy with it then.  His systolic murmur has to do with when the LV pumps the blood and the aortic valve being a little smaller than average.  Hopefully these will improve with time and growth.  Still, overall, it is a good result. 

Tiernan's x-rays continue to improve daily so that is another great indication that things are moving in the right direction.  I would love to say we might get to 3West in the next few days, but who knows.  This team is playing it safe and slow, which is never a bad way to go, even though it can be frustrating for an impatient person such as myself. 

In the meantime, I got to get out a little this morning with Karen to a great farmer's market.  We bought some delicious fresh fruits and veggies as well as some delicious indian things for my meals.  I had some scrummy dim sum and an amazing latte from Zombie Runner.  A combo running store/coffee shop!  Brilliant!    Jason is having dinner at their house this evening so he can have a chance to feel normal.  Thanks again to the Vasser family.  We are so fortunate to know you!