Tuesday, December 30, 2014

Unbelievable

Another unbelievable medical moment for us.

I called back to the pulmonary lab this morning and guess what?  Different people today than yesterday so I just casually said, "I just need to pick up copy of my son's cardiology report.  Could I have that by noon?"

It was that easy.

They didn't have it ready when I got there and when she realized that the doctor hadn't even signed his report yet, she hesitated.  I just prayed and prayed she was too busy to care and turns out she was.

I headed down through the corridor a bit, and read the report.  I didn't want to read it when I got back to the car because the kids were waiting for me.  I needed to buffer my feelings for just a minute.  On the way down there, I felt so terribly ill.  I don't remember a time I was so anxious I literally felt like I was going to be sick.

 I stood in a corner and couldn't even believe what I was reading.

     Aortic Insufficiency
     Mitral regurgitation
     Tricuspid regurgitation with mild elevation of right heart pressure
     Small hole or possible pulmonary AVM
     Enlargement of the right chamber

The cardiologist recommended that we do further testing to better define these abnormalities.  The test Sam will have next is a transesophageal echocardiogram.  They basically have to drop an ultrasound down his throat and into his esophagus to get a better look at the pulmonary arteries and the hole to measure it and pinpoint its exact location.

I don't even know what to think.

We have to wait until our doctor is back in town next week and then try to get in to see both the pulmonologist and get the cardiologist scheduled.  I also need to get feedback from Seattle Children's because they may want their own specialists to weigh in on this.

As I researched just briefly about each one of these issues, they can all lead to excess pressure in the lungs and vision loss because of the strokes.  So, it sounds like the hole isn't our biggest issue and maybe none of this can be fixed!  It's a sobering thought.

My Wasband has a client who is a retired Cardiologist and now teaches at a large University.  He happens to be in town and so he emailed him the reports to see if we need to panic and do something before our doctors are back in town.  Essentially, he said that we have time and really need to do the further testing before anything can be concluded.  Without knowing all of Sam's history, it's really hard for him to say but I was glad to hear that at first glance, nothing seemed life threatening.

He also confirmed that Sam is in fact having mini strokes.

Ask me how unnerving it is to go from not really knowing what caused Sam's vision loss for so long, to now knowing that he is actually having a stroke 'event'.   It's crazy and I'm trying really hard to not get worked up about it!  My mother instinct is also wanting to just make him sit on the couch and not move or raise his heart rate but, I let him go to iJump yesterday and swimming with friends tonight.  Those are huge deals for me...Like HUGE!!

So, we wait.  We wait til next week when the holidays are finally over and people are back to making a living for a change!  Ughhh...

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1 comment:

  1. I think about you guys a lot! I'll be praying you get answers quickly and can help Sam!

    ReplyDelete

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