Sunday, May 22, 2011

Thursday, May 12, 2011

Grow Aorta, Grow!

Its always so nice to be home after being in the hospital, but especially so when you're there for your kiddos.  Will's heart cath went really well.  Several people that were in the cath lab for it commented on what a great job he did.  He didn't fuss when they took him back, and sat there watching everything while they did some more prep work.  They said he didn't even mind the mask when they put it on him.

In the waiting room after signing in.

I was impressed that he wasn't even cranky from not getting anything to eat.  :o)

In the cath lab waiting area.

Although he did really well during the cath, the news we got afterwards wasn't all that great.  We found out he has bilateral femoral vein occlusion (both veins in his legs have been damaged and they cannot be used for caths...I guess this really isn't a big deal and happens in a lot in kids that have had IV's or caths in thier legs as infants).  They also found out he has some kidney abnormalities.  Instead of one output or "tube" going from each kidney to his bladder, he has 2 from each kidney.  After talking with nephrology, Dr W called us last night and said it wasn't a concern and just increases his risk of UTI's and kidney infections.  But the most disappointing news was that the balloon angioplasty of his aorta (the section where he had his coarc repair) was unsuccessful.

Still groggy from the anaesthesia.

When they ballooned the aorta, instead of staying open wide, it shrank right back down to where it was.  Most of his aorta is 8mm across (pretty normal size), but there is a long section (long as in not just a single location) that is only 4mm across.

Trying to tie his monitor wires in his gown so they would quit getting wrapped around his legs.

The good news is that the cath showed the gradient (difference in his pressure before the narrowed section and after it) was not as bad as the echo showed.  So, that means for now he will just get monitored.  If there is a change in his blood pressure (they take it in his right arm and then in his leg and compare the two) or any other symptoms worsen, then we'll be looking at most likely another surgery.

This is how most of his pictures look, all blurred because he wouldn't stay still!

They didn't really discuss much about surgery since he's just being monitored, but anytime surgery is mentioned for a heart kiddo its super scary.

Ready to be discharged.

Dr W told Will yesterday that he needs to tell his transverse aorta to grow so he wouldn't have to see him again except for a visit.  So we'll be praying for Will's transverse aorta to grow. 

Praying lots.

Thursday, May 5, 2011

Today's the Day...

...that I will get to hear the words "complete remission".  I just know it.  I meet with Dr H this afternoon to get the results from last week's bone marrow biopsy and I know the last 2 rounds of chemo did their job and kicked my cancer's behind. 

I am ready to be done with this whole thing and move on.  We have the March for Babies on Saturday, Will's heart cath next Tuesday and then the end of the month...we go on VACATION!  I cannot tell anyone how much we NEED a vacation!  I'm so excited to go to the beach (with a hat and sunscreen on my head of course!) and see all our friends in SC! 

I know today's appointment will lift a huge weight off my shoulders, Joe's shoulders, and those of our families as well.  So if you have a spare minute today, please say a prayer that I get the wonderfully good news I am waiting to hear. :o)