[tri-med] Re: cardio experts?


Lori:

Did they run an echocardiogram on Rylie?  If so, were you
there to watch it?  One of the things I find most helpful is to
view the echocardiogram as the technician and I can then
decide what we're looking for.

For example, they can turn on the color doppler to show you
exactly how the blood is flowing through the heart.  If it's red
or blue (not oxygenated vs. oxygenated).

Also, they need to tell you exactly how large the holes are in
millimeters.  How large is the VSD?  How large is the ASD?
Is the PDA really closed or does it need to be ligated (which
can even been done bedside in some cases)?

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

When Kashmir (full trisomy 18) developed hypertrophic
cardiomyopathy, we were very concerned as this is fatal.
I took her in every few months to run an echo and the
technician (Anna, who is a good friend of mine now) would
measure Kashmir's septum (the wall that separates the
lower chamber from the upper chamber of the heart.
Based on Kashmir's growth curve, weight gain, etc., we
could determine if the septum was getting thicker or
not.  This is the type of thing I really enjoy learning about
because it makes it easier to understand what the doctors
are explaining to me.

Kashmir is now 100% cardiac medication FREE (YAY!) and
has been given a clean bill of health where her heart is
concerned.  Once the VSD was patched, all her other
symptoms started improving (i.e. no more pulmonary
hypertension, etc).

Good luck and if you give me more info, I'll try to help
interpret it for you.

--Linda Adams
Mom to Jake, 10 yrs old,
Kashmir, Full Trisomy18, 4 yrs old
Evian Chanel, 3 yrs old
wife to Brian, 14 years




Lori Solander wrote:

> Are there any cardio experts on the list whose brain I could pick?
>
> I took Rylie to see the cardiologist last Thursday.  If I understood him 
> right, it wasn't a very good report. She had a VSD, ASD, and PDA at birth.  
> The PDA closed on its own.  When we were there last, he said that her murmur 
> was not as loud and that he thought one of the holes was almost closed.  He 
> has since retired.  The one we saw this time said he doesn't hear a murmur at 
> all, and that is NOT good.  He said the holes have not closed - the blood is 
> flowing over the holes more slowly.  He also said that she's always had 
> pulmonary hypertension, but that now it had progressed to pulmonary vascular 
> disease.  I was just wondering if anyone had knowledge or experience with 
> this.
>
> Thanks so much -
>
> Lori Solander, mom to Rylie, 4, full t-18, and Taylor, 9
> Topeka, KS  USA
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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