[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

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