Wednesday, May 31, 2017

More testing

I think the last of the immunology tests are rolling in so now we wait while our team decides what to do.  It's pretty clear that Sam's immune system is in rough shape.  Spencer's may be a smidge better but not great.

No word yet on Shelbie's tests that are still pending at Duke on the Adenosine Deaminase Deficiency.  I'm guessing that test takes a chunk of time.

I was surprised to find that Spencer's cardiologist actually posted something into MyChart.  In the past two weeks of monitoring on the loop recorder, he has had 6 events of tachycardia or bradycardia, each one to be of significance.  That's a little disturbing.  His remarks are that he will continue to watch him closely.  The doctor even included images from the recording.  At one point, Spencer's heart rate dipped into the mid 30's!  I didn't even know a person could still be alive with a heartbeat in the 30's.  Apparently, my boys are defying the odds.  We see the cardiologist in a couple of weeks but I'm not guessing he is ready to pull the trigger on a pace maker yet.  Last month, Spencer had 4 problematic events with his heart.

I kind of think that Spencer doesn't even mention his heart issues anymore.  I think in some ways, it's become so commonplace for him to feel lousy.

I'm so happy to report we have had no gas leaks this week!  It's a miracle really! We are really enjoying the abundance of oxygen we have been spoiled with.  



  1. Did any of his heart events coincide with the gas leaks?

    1. Nope. That would have been interesting though. Maybe the extra low rate you could argue but it's been such a long term issue, it's not likely.