[tri-med] Re: cardio experts?


> Did they run an echocardiogram on Rylie?

Linda -

No, and if I'd been thinking, I would've requested one.  She had one 4 yrs
ago in the hospital, and another one at a check up, I belive it was at
either 3 or 6 mos.  The dr we had said he didn't see any reason to repeat
them, since her murmur was "resolving itself."  When her ped gets the
report, I'm going to talk to him and request one.

> How did they determine Rylie had Pulmonary Hypertension?
> Did the doctors prescribe any cardiac meds to treat this?

He said she has had pulmonary hypertension since she was born - I didn't ask
how they determined that.  I guess I assumed it was caused by the defects.
But he said it has progressed into pulmonary vascular disease.  He had me
lay my hand across the top of her chest, and I could feel a "clicking" that
seemed separate from her heart beating.  He said that was her pulmonary
valve "slamming" shut from having to work so hard to move the blood to her
lungs.  He said he definitely should not be able to hear or feel that.

Rylie has been on Lasix since she was a couple days old.  She has been on
Lanoxin since she was a couple months old.  She was due (past) to have her
dig level checked when we went in.  When I brought it up, he said that the
doses were so low that they probably weren't doing anything for her, so we
should try to take her off both meds.  Start with the Lasix, and if she does
ok, take her off the Lanoxin a week later.  I want to talk to her ped before
we do that, though.

> Kashmir is now 100% cardiac medication FREE (YAY!) and
> has been given a clean bill of health where her heart is
> concerned.

Good for Kashmir!!  The less meds you have to put in her little bod, the
better.

I hope I don't sound too stupid and uninformed - When the cardiologist was
talking to me, Rylie was yelling and trying to stick her fingers in my nose
and mouth.  She also had a cold, so I was trying to keep the snot bubbles at
bay at the same time.  Right before this appt, I had a med consult for my
son, Taylor, who has been diagnosed with ADHD.  My tiny little brain is
full.  I feel like I know nothing about a little bit of everything!!  UGH

Thanks for listening -

Lori Solander, mom to Rylie, 4, t-18, and Taylor, 9
Topeka, KS  USA


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