Sunday, February 17, 2013

Cardiology Appointment

All tied up for my EKG on Friday.
LOTS of wires to play with!!
Aaron met with cardiology on Friday.  The good news is his echo, EKG, and labs show no change from before.  The bad news is, clinically he's showing significant signs that his pulmonary pressures are not currently under control.

Now this happens when he gets sick.  None of our bodies function optimally when we're sick.  Other things like bad air quality can also play in to it.  Unfortunately, we can't blame it on any of these things.  Air has been pretty good here lately, much better than in December/January.  And he's not sick, not at all.

So we've upped his medication and are waiting for it to kick in.  I'm told it can take about two weeks for it to be fully effective.  So for now, we're just hanging tight, a little tighter than normal because of those tight lungs!!

He's happy, really happy.  He's just needing more oxygen and to be upright.  And I'm not venturing very far away from him.  Yesterday was a ballroom competition down in Orem.  Deborah and Jonathan were dancing.  He went with us.  Even if I'd had a nurse, I don't want to be that far away from him right now.  And he had a blast!  Did wonderfully!  Of course, he was pretty much upright the whole time.  Funny how that helps with his breathing.

Hanging out at the ballroom comp.
I am watching carefully.  If he does struggle beyond what I'm comfortable (okay, not comfortable, "willing to tolerate" might be better) there are things they can do to help him.  But those things will necessitate a trip north, and probably a stay in the PICU.  So for now, we keep hoping and praying.  And just keep trying to build those memories and experiences to last a lifetime and beyond.

God gave burdens, also shoulders. 
 ~Yiddish Proverb


  1. What meds is Aaron on? Man I HATE cardio trips.

  2. And if his echo looks good, what clinical signs is he showing?

    1. He's on sildenafil and they're increasing the dosage. He's using more oxygen and having break-thru PH episodes where he drops his sats but his lungs still sound really good, so he's sending that unoxygenated blood thru his VSD over to the left side to circulate. Plus, the biggie, is that he can't tolerate lying flat. He doesn't have to be elevated much, but if he's down all the way, he can't keep his sats up. We saw Dr. Judd Friday (did all the testing on Monday night at the ER) and she said to increase it and come back in 2 weeks. If he's still struggling, they'll add in another med, I can't remember which one. We can't get into Dr. Menon at Riverton until mid-March, but they've sent him an email and if he's not okay with that, I guess we'll head up to the main campus before then. Just really, really hate the rock in the stomach feeling. I know you know what that's like.

  3. Day usually sees all the PH kids. Does he not see Aaron?

  4. Have you seen Pulmo? Perhaps his vent settings need to be seen?

    1. No, we see Dr Menon. He's followed us since before Aaron's birth and I really like and trust him. We saw Dr Judd on Fri because she was in Riverton and had an opening. Pulmo also pulled a blood gas to check vent settings and all looked good there. So we're waiting and watching for the increased dose to kick in. Of course, if I get too nervous, we'll be heading up north again. But at least for now, he's hanging in there okay,pretty much.