Wednesday, October 30, 2013

What if it's NOT Pulmonary Hypertension??

There is a tale out of India about an elephant and six blind men.  Each encounters one part of the elephant and bases his assumptions of the whole on that one part.  We think, we're hoping, we're PRAYING that we've been playing the part of a blind man here.

Here's the thought process this morning:  what IF these problems, these challenges that we've been seeing the past six months aren't all related to his pulmonary hypertension?  What if they're NOT being driven by his heart disease?  What if, instead, they're being driven by his LUNG disease, his asthma?  

Yesterday morning, completely wiped out after a night
in the ER with labs and needle pokes and x-rays.
Maybe he's not declining like we've been fearing.  Oh, his pulmonary pressures aren't happy, that's for sure.  But what if the airways are inflamed and the pulmonary arteries and veins aren't happy because air isn't moving through the lungs like it should be instead of the other way around?  Maybe it's his lungs.  Yeah, great big "what if" and "maybe."  

So here's the thinking:  Aaron was doing very well all through the winter.  In fact, even though usually you don't make changes during the winter, he was weaning off the vent and was up to six hours a day without any breathing assistance.  Then in April, he caught a cold which sent his asthma into overdrive.  We spent almost two weeks trying to get it under control enough to go home and keep working on it for another month. 

Tonight, happy and playing.
But what if it still was not doing well?  I mean, up until then, we had used his albuterol twice in over a year.  Once was when he acted like he needed it, the other was when Alpine was burning and we were trying to make sure he didn't develop a problem.  Since then, I've used it a few times a month, four times in the last week alone, AND he's responded to it.  

And let's top that off with his history.  His first winter he was in and out of the hospital All The Time.  We didn't make it three weeks between discharge and our next admit.  But the second winter, he was only in twice.  Granted, those two times weren't fun.  They were about two weeks each in length for pneumonia and a pneumothorax (yeah, that one was fun).  Then his third winter, last year, not only was he not sick, but we were also weaning him off the vent. 

His oxygen saturation rate was being
really weird tonight, so I went to see why.
Um, we're supposed to be measuring the
oxygen content of his blood, not the air
around his bed...
But in the six months since his really bad asthma attack, we've been in and out much more than I'd like to be.  Couple that with I can handle a lot more at home than I used to and he's actually been much less stable there as well.  So, like I said, we're hoping and praying that it's asthma driven instead of pulmonary hypertension driven.  'Cause even though asthma isn't fun, there are a lot more treatment options for it, and it doesn't have to end his life on this earth.  And I'm just not ready for further progression of his PH.

So we're starting a three day course of steroids.  If he responds well to them, it will show that it is driven by the inflammation is his lungs and we'll add in another asthma control medication.  Please pray with us that this works.  Please pray that his time will continue to be lengthened out.  I have no doubt at all that he will be here just as long as the Lord has in mind.  I'm just praying that it's still a long ways off.  

I have been driven many times to my knees by the 
overwhelming conviction that I had nowhere else to go.  
~Abraham Lincoln


  1. I will be hopeful for "just asthma"

  2. This season has been a tough one for my three asthma boys. I am hoping for Aaron that this is asthma... and that you find the right levels of controller meds for him. We use albuterol a lot when there are head colds running through the house. It is safe to use every few hours for those tough days. We have landed in the hospital several times in spite of the control meds. I learn so much every time we go and I go through the training again. Seriously... same training, but something else starts to make sense. We really need to go to lunch together soon. Hugs!

  3. Oh now that is a very exciting idea! I will be praying that it is "just asthma!" And for the Lord will continue to generously extend Aaron's days!