Tuesday, May 24, 2011

Big News

So...all the test results are in.

When the doctor consulted us yesterday afternoon, she brought a chair. Bad start. The first words out of her mouth were, "I don't have great news." Worse continuation. But having learned to /r/e/a/d/ around here, I interpreted it this way: a) the best case scenario has not happened; b) neither has the worst; c) the problem is worse than we hoped d) yet there is a plan of action.

Sure enough...let's start with some good news.
1) All of Sam's blood cultures have come back negative. This is perhaps the most important note. Otherwise, our options would truly be dwindling.
2) Sam had another swallow study yesterday, and graduated from the greatest thickening level (honey thick) to NO thickener at all! When one of the technicians remarked, "Wow, it's unheard of to see such progress in six weeks," Kristin and I simply laughed and said, "Meet Sam, king of 'unheard of.'" While not related to the main issues, around here good news is good news, and we will gladly accept it in any form.

Now for the "not great" news:
1) Despite not having an active infection, the vegetation on his aortic valve is still growing. Think of it as a pearl; it grows by slow accretion. Once there is an "irritation" (like a piece of sand), stuff starts sticking to it. So while it is not infected, it is collecting little...particles floating around in the bloodstream.
2) Worse, this aortic vegetation (as opposed to the the original, tricuspid one) is "mobile" within the aortic valve. That means it will experience three things: more turbulent flow, faster blood flow (smaller opening), and more friction from bumping into the valve. That means it has a much greater chance of breaking off and doing some serious, likely irreparable, damage.


it has been decided that Sam will have to undergo surgery sooner rather than later; the risk of waiting a month or more for the normal time frame of the Glenn surgery is simply too high. And for the first time since we've been readmitted, all the teams of doctors--cardiology, surgery, neurology, infectious disease--ALL of them agree that surgery is Sam's best option at this point.

So, while we were not in a hurry to get to his Glenn procedure, a surgery he would have needed eventually, we are now. The Glenn will happen, and at the same time, the surgeon will remove the vegetations. In fact, surgery is scheduled for tomorrow morning at approximately 7:30 a.m.

Quite a week, huh? Please wish little Wolfie luck! We will try to update throughout the day tomorrow to keep you informed.

In the meantime, here are a few recent pictures of the little guy:

This is Sam being his normal cute and quizzical self...just a bit chunkier:

Sam enjoying his first non-thickened meal! It was a bit awkward, but he got through it just fine:

And finally, the smiling guy in a little bear hat. So cute!


  1. I'm definitely praying! ♥

  2. Good luck Wolf Man, we will be praying hard for you buddy.

  3. Good Luck Wolfie! I know you are going to do great! I am praying so much for you and your family.

  4. I am praying hard as are many others.
    God please bless little Sam with a safe surgery which accomplishes all that needs to be done. Be with the doctors and nurses caring for Sam, please work Your miracles through their hands. Be with Jason and Kristin and give them peace as the next few days progress. Thank you, Lord.

  5. My fingers are crossed and I'm holding my breath...

  6. Thinking of you and hoping everything goes well tomorrow. Sam is so adorable; love his smiling pictures!
    Sarah S

  7. Sam, you are such a cutie! I will have you and your parents in my prayers, as always.

  8. I will be praying for all three of you! Wolfie - you are one amazing little man!

  9. When there is a BA ad with TAR, you need more than a " chair" or CHARO or CHER.
    Even a SHERYL is no" good".

  10. Praying for your beautiful baby boy and both of you...

  11. You are all in my thoughts, my prayers, and my heart!

  12. We wish Wolfie much luck and send good thoughts and many prayers your way today.

  13. Hoping things go well this morning. My thoughts are with all of you.