[tri-med] Re: Philip James Heart Surgery

I'm so sorry to hear about Philip James.  You gave him a fighting chance, yet 
GOD needed him now.  Until you see him again, may your precious memories bring 
a smile to your heart.
Annette
  ----- Original Message ----- 
  From: JMSK8RPRO@xxxxxxx 
  To: tri-med@xxxxxxxxxxxxx 
  Sent: Wednesday, September 25, 2002 1:34 AM
  Subject: [tri-med] Philip James Heart Surgery



  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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