[tri-med] Re: Philip James Heart Surgery

Dear Larry & Jackie,
  You are in our thoughts and prayers for today and all the days to come. You
were definatly blessed to have such a precious gift from God tho you couldn't
keep him on this earth. We will all look forward to the day we can hold them
close to us and till then we'll hold them in our hearts and cherish the 
memories.
I think that is great you'll be helping to see that the hospital treats the
future children that need a voice. At the time the parents are going thru the
decisions your guidance will be priceless.
I'm sure your little Phillip and our little Kaden will be great freinds up in
heaven.
Tho we didn't get to spend anytime live time with Kaden after he was born, he 
too
taught our family so much. The unconditional love a parent has for a baby, tho
you hear the chances are grim. The closeness to God and family while waiting for
his arrival. The family members that said, "I'm just not strong enough to bare
this greif", found they drew strength from that little baby, and they could be
strong enough. I just kept thinking of the statment, "The peace that passes all
understanding." Because no where in my mind, going thru all this, could I
understand how we could have peace. It makes you appriciate just how important
each and every person is when one little person in our family was the most
important. I said I don't ever want to go thru this again, but niether would I
trade it for the world.
Our love and prayers to all of your family.
LouAnn Bieck
York, NE
mom to Melissa,24 mom in law to Trent, Grammy to Maelin,2 & Kaden James^i^
9/04/02 our precious Angel
also mom to Mick,28 & TJ,14

JMSK8RPRO@xxxxxxx wrote:

> 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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