Praise God!

I don't have time to post today's saga.  It was a long day.  Hopefully I'll have time to write out the adventure tomorrow evening.

So many wonderful things happened today.  They were able to get excellent imaging of Josiah today.  The doctors still have to review all of the images and measure various things; however, Josiah's pulmonary veins have NOT narrowed.  Even the lower left vein that only a trickle of blood was getting through has NOT closed.  In fact, collaterals have developed which take blood from the lower vein to the upper veins (yes, his right lung has three pulmonary veins instead of two) to get through to the heart.

The amazing news is that we will not pursue the experimental drug study out of Boston because we don't think he's eligible because we don't think he has pulmonary vein stenosis but instead has pulmonary vein hypoplasia.  Wow!!!  The cardiologist does not expect the veins to narrow further.  WOW!!!  Thank You Lord!

The doctors will review the images and then present Josiah's case to everyone next Monday and then I'll call on Wednesday to find out what was said.  It sounds like Josiah's shunt may have narrowed somewhat so one potential option would be to put a stent in the shunt but they would likely want to do a full assessment with a cardiac catheterization to see what's happening with the pulmonary pressures.  Josiah's heart is larger than it should be so his lower left pulmonary vein is compressed between his heart and his spine.

Josiah is still very blue with low oxygen saturation levels and they are wondering if they can do something to increase his sats.  

It was so lovely to see a couple of friends today, including another heart mom who just happened to be in the hospital.  My other friend was able to rock Josiah as he slept and our meeting time worked out perfectly.

We left our home shortly after 6:00 AM and I left our final appointment at 5:45 PM.  Josiah wasn't content to let his Mommy relax on the ride home.  He decided to try to pull out his NG tube and I grabbed him just in time and asked Dad to pull off at the next exit.  However, he was quite happy on the ride home (when I wasn't pinning down his arms) and that's when I snapped his smiling photo.  He must have heard the good news! 

Isaac was so well behaved today!

Horrible news:  Starbucks has discontinued the raspberry chocolate cake pop!  No one told me!  When did this happen?!?

I must get to bed.

Thank you for praying!!!  We need continued wisdom, as do the doctors.  I send a huge thank you to the person who gave me an encouraging note today.  It was so kind of you to take the time to do that and it means a lot!

Blessings,

Elizabeth

1 Chronicles 29:13
Now, our God, we give you thanks, and praise your glorious name.