Sunday, July 28, 2013

Pulmonary Hypertension

High blood pressure, hypertension, is not your friend.  It damages the arteries in your body.  They get stiff and that makes it hard to carry blood.  But your body also has a lot of other pathways, other arteries, that may not be as damaged.  And we can get away with less circulation to our hands and feet than is optimal.  Not necessarily a good thing, but it's livable.

Pulmonary hypertension, or high blood pressure to the lungs, is a bit of another story.  There are only a few pathways into the lungs.  And not getting enough blood and oxygen through there, well, let's just say that it's a bit more critical than not getting enough to your extremities.

Pulmonary Hypertension is a bully and that's what we all seem to think we're dealing with here.  He's had it probably since birth.  We started treating it when he was four months old, just before his trach/g-tube surgery and have had good success with his medication.  We saw some breakthrough episodes early on, but the cardiologist increased his schedule from every eight hours to every six and that seemed to do the trick.  Unless he was sick, we had no trouble at all.  Oh, we had to increase his dosage due to weight gain, but all in all, pretty simple.

I'm really not sure what's changed.  We saw things slowly begin to change this spring.  He started to become less stable, but very gradually.  Now it seems to be a little quicker.

Yesterday we spent the day trying to make sure it wasn't a mechanical issue with the ventilator.  Oh, I really wish it had been.  But we got things figured out with the circuit and extensions, and the episodes continued.  He looks fabulous when asleep, not so much awake.

Cardiology will come by today and we'll talk.  I didn't actually see an attending in the ER on Friday night and I'm hoping they've got some good ideas.  I want to bounce a couple things off the Trach Ninja tomorrow when she's in.  And we need to find something we can work with.  Because working heart and lungs, well, they're kinda important to sustain life, kinda critical to him sticking around.

The human body is the only machine for which there are no spare parts.  
~Hermann M. Biggs


  1. So sorry to hear that, it is a hard struggle to keep the failing body going when it starts to lag more and more. He is so lucky to have you and the rest of his family! He has been so loved and lacked for nothing! I think your grandest day will be when you see him on the other side of the veil and he can show you how much he loves all of you! Prayers for you and yours!

  2. I'm so glad you have this blog so all the people that love Aaron can stay updated without bombarding you. I just wanted you to know you, Aaron, and your family are in my thoughts and prayers.

  3. This is so not the news I wanted to hear for you and Aaron. But I am keeping positive thoughts for your little guy.