[tri-med] Re: More about Meds - Heart

Elanor had PDA and VSD when she was born.  She had congestive heart
failure and was pretty sickly.  The PDA didn't close like we were
hoping, so we had that fixed when she was 6 months old.  That helped her
condition quite a bit for a while, but her poor little heart just
couldn't keep it up.  The VSD was about 1/4 inch wide, but the echos
didn't show that it was twice that in length.  Elanor had rsv many times
and always developed pneumonia from it, and she got it in Feb. when she
2 years 1 month.  It turned into pneumonia, and she just got worse and
worse.  She eventually couldn't breathe on her own, and we had to have
her intubated and put on a ventilator.  She got to where there was so
much fluid in her lungs and she was so weak she couldn't come off the
vent unless we fixed her heart.  She was heavily sedated so she wouldn't
pull out the breathing tube, but she did have moments of clarity.
When she was awake, we could see that she knew us.  She tried to smile
at us when we spoke to her, and she still had her twinkle in her eye,
however weak.  We had a lot of people praying for her and us, and our
pastor and elders of our church prayed over her.  After all of that, we
felt that it was our obligation to help her fight if she still had fight
in her, and to let her go if she couldn't go on.  Well, every time we
saw her, she was our same little ornery Elanor!  Our cardiologist was
even willing to go to bat for us.  He actually had to convince the
surgeon to do the surgery on her, since she was so high risk.  So, we
decided that everything seemed to point to surgery.  She flew through
the surgery, but they apparently nicked the diaphragm when they had her
open, and half was paralyzed.  We had to have a tracheostomy done, and
she went home 6 weeks later on a home ventilator.  We had home nursing
at the time, and she came off the vent after about 6 months.  She is
doing great now, and only sees her cardiologist every 2 years.  I hope
that wasn't too long!  I could go on and on and on....

That gives you a little insight into our experience, but remember that
each of our kiddos are different, and we have different things to
consider.  I believe that God pointed us to the decision we came to, and
we couldn't have made it alone.  We also came to the realization a long
time ago that we only have both of our girls for a short time.  Who
knows, Elanor might live longer that Arwen. And when Elanor dies she
will be with Him.  What a wonderful thing!  That really takes a burden
off of me--for now.

Jennifer, mom to Elanor-4!, full T18; and Arwen-6; caregiver to Joe-25
cerebral palsy & spastic dysplasia; wife to Andrew-32 and wonderful! 
Boise, Idaho USA


-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of The Ngais
Sent: Monday, January 26, 2004 4:14 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: More about Meds - Heart

Hi Jennifer:
Just curious...when did Elanor have her heart surgery? What did it
repaired? How did you come about the decision? 
 
Thanks.
Jennifer Vanderbeek <Phil46@xxxxxxxxxxxx> wrote:
Oh-I forgot. Elanor was on dig and lasix for about a year or so, but
they were discontinued after her heart surgery. No seizures then,
either

Jennifer, mom to Elanor-4!, full T18; and Arwen-6; caregiver to Joe-25
cerebral palsy & spastic dysplasia; wife to Andrew-32 and wonderful! 
Boise, Idaho USA


-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of MARTA MCCLANAHAN
Sent: Monday, January 26, 2004 2:05 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: More about Meds - Heart

I have a question kayden has a small VSD but he also has pulminary
stenosis{ ? on spelling} any way with that most will have to have
aurgery one day but his last two ecos have showed that it has gotten a
little better instead of worse, he has never been on any heart meds but
we he has surgey they give him sothing for his heart,,, should he be on
something every day?????
----- Original Message ----- 
From: Debbie 
To: tri-med@xxxxxxxxxxxxx 
Sent: Monday, January 26, 2004 11:59 AM
Subject: [tri-med] More about Meds - Heart

After corresponding with Aimee (mom to Rachel), I realized that the 
antihistamine (Dimetapp) I'm giving to Claire may be contributing to
her 
seizures. No one ever told me (yes, we say that a lot around here)
that 
meds that 'dry' and seizures were related.

That makes me wonder about the lasix and digoxin (heart meds). Anyone
have 
any input to whether they would affect her to cause seizures? It
seems 
like one of them has a purpose of drying (causing excessive 
urination). Coincidentally, two weeks after we started the heart
meds, she 
started the seizures.

It believe Katrina's Baby Rachel is on the same heart meds too (BTW,
Great 
Journal Katrina!!) . Does she have apneas/seizures too? Perhaps this
is 
just coincidental. Anyone on these meds w/o having seizures too? Do
many 
full T18 babies here have seizures? w/o heart meds? w/heart meds?
Are 
seizures and apneas so close that we sometimes get them confused?
Perhaps 
an apnea may actually be a seizure? Jude, Did Kam have seizures as a 
baby? Is Claire waking often at night because she is having apneas?
Why 
does it rain? Where is the end of the universe? What is the meaning
of 
life? ...

I know seizures are common in T18ers... and the heart meds are a 
necessity... always looking for my own logic.

Our Ped seems to think heart meds and seizures are unrelated and
Claire is 
prone to seizures anyway.
He is always so rational. I may 'hit up' the ped card next tho with
all my 
questions.

As always, thanks for all the input!

Debbie, mom to Baby Claire (full T18 and 10 months old)
http://www.debbwebb.com/Claire/

Building ___ooOOoo__ Rainbows
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Building ___ooOOoo__ Rainbows
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Families Helping Families On-line

Building ___ooOOoo__ Rainbows
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Families Helping Families On-line


Katrina 
Mom to Rachel (full T18 b.Aug 4,2003) 
Patterson, New York USA
http://users.rcn.com/pngai/rachel

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