[tri-med] Re: Philip James Heart Surgery


Jackie,
Our thoughts and prayers are with you.  May the Lord comfort you and your
family during this difficult time.  I like the song too.  Thanks for
sharing with us.

Lavinia, Richard, Lynn and Megan (angel, 6/19/02 to 6/29/02, T-18)




                                                                                
                                                        
                      JMSK8RPRO@xxxxxxx                                         
                                                        
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                      eelists.org               Subject: [tri-med] Philip James 
Heart Surgery                                           
                                                                                
                                                        
                                                                                
                                                        
                      09/25/02 02:34 AM                                         
                                                        
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Hi all!  Usually Larry does all the e-mails and keeps me up to date with
everyone.  I am not much of a computer person.  I get frustrated sitting at

the computer.  However, I wanted to let you know how Philip's surgery went
last week.  It is with a heavy yet peaceful heart I must tell you that we
need to add another Angel day.  Here is the events.
We went to Riley Hospital in Indianapolis, Indiana on Wed Sept 18 for the
pre-op appt.  We had a new echo done and all the blood tests etc.  All was
well.  Nothing new on the echo.  Thur Sept 19 we went in for the surgery.
The VSD was much larger than expected and Philip had the double outlet
right
ventricle that we thought was misdiagnosed before birth.  The surgeon did a

wonderful job of the patching.  He was able to take the patch up between
the
pulmonary artery and the arota to create the seperation that should be
there.
 Philip came off the heart/lung machine without any problems.  His
pulmonary
pressures went to normal.  The pulmonary hypertension appeared to have been

reversed.  Philip was doing fine for about 14 hours.  His pulmonary
pressure
starting rising again.  He did not respond to any of the meds they were
giving him.  The starting doing chess compressions and brought in the
ultrasound machine to see if they could tell if the surgery did not take.
Everything look fine.  As they were trying to get the pressures back under
control, they kept going up.  They did chest compressions for 3 hours.
They
were talking about putting him on the ECMO machine, but the survivability
was
next to zero.  Even an otherwise healthy child does not survive 3 hours of
compressions and the ECMO.  They needed to put him on before they started
the
compressions.  Anyway, Larry and I do not blame the doctors.
I have felt 1 of Philip's missions was to teach the doctors at Riley that
they need to treat T-18s.  The chief cardiac surgeon talked with us and
stated that he had learned several things from Philip.  One of which is
that
the next T-18 needs to have the surgery at 3 months old before the
pulmonary
hypertension sets in.  This gives us hope that Riley will continue to treat

T-18s.  Larry and I are not done at Riley.  We are planning on staying in
touch and will make sure they follow through and continue to treat T-18s.
Philip left us at 11:46am Friday Sept 20.  We will bury our precious little

angel Wed Sept 25.
His life touched so many people and he taught so many of us so many things.

He taught us love, strength, joy, perserverence, compassion.  He taught the

medical profession they are not always right.  They must look at the child
not the diagnosis.  They   will move forward and help other children.
I am sure Larry will e-mail you later this week.  He gets more techincal
than
I do.  If you have detailed questions, he will certainly answer them.

Philip said good-bye by sending me a song, the words in parenthises is what
I
think he was saying:
I have decided to follow Jesus (he is ready to follow),
Tho none go with me, still I will follow (we could not take this walk with
him)
The cross before me (he had all his sacrements baptized, confirmed)
The world behind me (he was ready to leave this world for everlasting life)
No turning back, no turning back.

We will have this song during the funeral mass.
Thank you for all you support.  We look forward to continuing connecting
with you.

Jackie Greenbank
                  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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