[tri-med] Need reassurance

Hi everyone,

My name is Julie, and I have been lurking for several months.  My husband 
Scott and I have a four-month old daughter named Emma Grace.  She is full 
T18.  Some background on Emma--

She was born August 5, about 5 weeks early.  She weighed 2 pounds 14 oz.  We 
knew that Emma had a heart defect (we thought tetralogy of fallot, but now 
the main concern is really just a large VSD) but decided not to have an 
amnio to find out about genetic anomolies, so we found out about the T18 
about 4 days after she was born.  After 10.5 weeks in the NICU in Topeka, KS 
(where we live), she was able to come home.  In the NICU, she was on a vent 
for just a couple of days, then on CPAP for several weeks, before 
"graduating" to high flow nasal canulas at room air. She needed the 
pressure, not necessarily the extra O2.  Emma went home on an air compressor 
bled with O2 to mimic the high flow canulas.  After 6 weeks at home, Emma 
ended back in the hospital.  Unfortunately, neither of Topeka's hospitals 
have a pediatric floor that can support Emma, so she's about an hour away in 
Kansas City.  She was admitted with severe respiratory distress, and because 
of a swollen airway, was not able to be intubated.  She received a trach 
almost three weeks ago, and is still on the ventilator.  They eventually 
diagnosed Emma with bronchopulmunary displasia and said her lungs have had 
chronic changes, though they don't know from what.  Aspiration is thought to 
be the culprit.  The cuff on her trach should prevent secretions from her 
mouth from getting into her lungs, and last Thursday she had a g-tube placed 
and a fundo done to prevent reflux (though there is no evidence of reflux 
being a problem).  She was having abdominal surgery to correct a 
mal-rotation of her instestines (which she didn't end up actually having) so 
we had the g-tube and fundo done.  We are letting Emma heal from the 
surgeries and hopefully decide that she wants to come off the vent.  They 
are trying to wean her, but she seems to have trouble getting rid of her 
CO2.  They are starting her on steroids today and giving her albuterol 
treatments, essentially treating her as an asthmatic.  Her heart defect does 
not appear to be a problem at this time, or at least that's what they keep 
telling us.  Her growth has been good.  She weighs a little over 9 pounds.  
Emma looks like a chubby, healthy baby--it's so hard to believe she has so 
many problems on the inside.

We have been struggling with the hospital--we don't like it there but don't 
have many options.  It seems like every time we turn around someone is 
trying to talk to us about pallative care for Emma. One doctor refers to 
kids like Emma as "these characters."  T18 is always in the forefront of 
their minds--I think they wrote her off the minute they found out about her 
diagnosis.

My husband and I aren't ready to give up on Emma--she is a fighter and has 
surprised us many times.  I guess I just need some reassurance from people 
who have been there, done that--stood their ground with hospitals and 
doctors--that we are doing the right thing.  We don't want our daughter to 
suffer needlessly, but we also think she could surprise them all (though I'm 
not sure they really care).  Some days, mostly when I'm exhasuted, I think 
we are just prolonging the inevitable, but other days, I feel in my gut and 
my heart that she is strong enough to come off the vent and go home and be 
happy.  But then I worry about what is going to happen next to put her back 
in the hospital.

Thanks for reading my ramblings.  I have gotten a lot of information and 
support from your postings.  You and your kids are wonderful.

Happy Holidays!

Julie, wife to Scott and mom to Emma Grace, born 8/5/04
Topeka, KS


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