Tuesday, April 7, 2015

Second verse...Same as the first

Cardiology today for Shelbie.  Not great news.

Can you tell I'm tired of this?  I'm trying not to be but I am.   Maybe it's because Sam is sick...again!  And we got sideways news from the doc today.

She basically passed most of the additional testing the doctor ordered for the past two weeks which is great.  Especially the acid reflux test.  Several doctors have been trying to tell me that she stops breathing because she has acid reflux.  That barium test came back absolutely negative...no acid whatsoever.  That blows their theory!

So, everything turned sideways when again, her heart rhythms are off.  Especially when she exerts herself with even a cough.  Just a cough and her heart freaks out.  So, she is no longer allowed to exercise.  She is also shunting blood somewhere other than the hole in her heart.

This brings us all the way back around to ...THE ELEPHANT IN THE ROOM...AKA...PULMONARY ARTERIOVENOUS MALFORMATIONS!!!  (You should read that in your best screaming voice.)

I told the cardiologist that the pulmonologist doesn't think she has a serious lung problem other than some scarring from some random bird/feather fungus crap but other than that, her lungs are totally perfect!

He chuckled..."I wouldn't go that far."

During his exam today, he said, "What are you doing for her asthma?"
"Asthma?  Does she have asthma?"
"Well, it sounds like asthma to me...they sure don't sound good.  I would think she should be on some steroid inhalers."

Sheesh!  Long story short...We are on our way to Salt Lake City for a cardiac MRI.  Thank Heavens a voice of reason!  I may be wayyyyy off and she may just have some bird/feather fungus crap but I need to know that we have ruled out Pulmonary AVM.   This is just getting ridiculous!

In the meantime, she is on blood thinners because of her stroke risk and a medication to stabilize her heart rhythm.  The only problem is, the drug is going to lower her already very low blood pressure.  It could be disastrous so we will have to take it slow and keep a close eye on her.

What a day!


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