Wednesday, May 23, 2012

The Misadventures of Nate the Great

Just when you think your plate is full....well, just push everything over a little and you'll find you can squeeze a bit more on the side!  Now, this would be fine if we were talking literally, and you were scooping on another serving of verenki or something!  Unfortunately, in our case, we're adding on something a little less savoury.

This afternoon, Nate took a fall off of his chair while finishing up lunch.  He landed smack on the side of his body.  To make a long story short, he broke his collar bone.

He's doing pretty well, but it kind of changes every part of the day to day.  Right now, he's sleeping on the recliner.  He tried lying down in bed, but that was obviously causing him pain.  The injury is on his right clavicle which is rendering his dominant hand useless right now, being in a sling.  It feels similar to how life was post-operatively, the careful way of picking him up 'scoop style', feeding him his meals, and just being wary of his every move.  I'm told these things can take up to six weeks to heal, but I'm counting on the resiliency of a child, and the power of prayer to the Great Healer, to get him back to his regular self.

Monday, May 7, 2012

Our Day

Thanks for each one of your prayers today.  They were felt and answered in different ways.
The drive in was great until we got grid locked on Route 90.  It took 45 minutes to travel less than 2 km's between  Corydon and Academy.  SO frustrating.  And I hate being late.  That's why we always add in a good 1/2 hour of grace time anytime we travel in for an appointment.  Well, we used up that grace time, and more.  But the clinic was very understanding, and had some other people who were stuck in the same traffic.  And the lemon poppyseed bundt cake I brought for them helped, too!

The awesome news is that Nate did pretty great!  There was a little bit of resistance, but nothing that I couldn't talk him through.  I didn't even have to pull out the new toy I had bought for this purpose....the gummy bears seemed to have done the trick this time around!

The news that was a bit harder digest is what the echo showed.  Good new is that his liver is normal and he is not showing signs of heart failure.  Bad news is the gradient, which 4 months ago finally showed it's first increase and improvement since surgery 2 years ago, has decreased significantly.  We're back at the numbers we were before surgery.  The band hasn't changed, still showing the same diameter and position, so it isn't a problem with the band, or that redoing that banding surgery would correct.

What comes next?  Well, to start, we're upping the lasix (diuretic) to twice daily.  We'll try that for a month and go back for another echo on June 18th, to see if that gradient number is staying put.  If there is no change, Dr. Soni feels that intervention is required.  And this is the tricky part with Nate's L-TGA (or Cc-TGA), valve replacement or repair really isn't going to be an option.  So, that leaves us with Transplant.

To me, right now, that's a scary word.  A word that if I allow myself to go there, even for just a minute, it overcomes me.  So, I try to think only of our God who is stronger.  Who is greater!

I'm sure I'll be back soon with more, but for now, I hope this gives you the info to update you.  It's the best I can do with just a few hours to process this ;).  Thanks for praying us through this day!  And thanks to my mom for company for the drive and help along the way!

Sunday, May 6, 2012

FOUR

Our little man turned 4 last week.  A fun day for all involved!

 Even strawberry jam toast seems special for breakfast
when you're sitting on the birthday balloon chair!




There were a few moments of stress, when at 3:00 he decided he no longer wanted his Flyers vs. Sharks cake.....suddenly a construction cake is what was all that he wanted!  Oh yes, there were tears involved!  Somehow, in the end, his hockey cake met his approval.



And what is just as good as Lego??  Cold, hard cash is!


Just a note, tomorrow is another trip to see his cardiologist.  Please pray for Nate!  I sure would love for this appointment to finally be a good experience for him (and us!).  Thanks in advance!