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Old February 6th, 2012, 08:51 AM
pamphillips01 pamphillips01 is offline
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My Grandson is dying~

Hello everyone. My name is Pam. I am 41 years old, and I am a first time Grandmother to my beautiful Grandson.

This beautiful amazing baby came into my life on January 2nd, and was born with a severe birth defect known as Congenital Diaphragmatic Hernia, (CDH).

His diaphragm failed to fully form and his abdominal organs passed through the opening and developed in his chest. This in turn didn't allow for his lungs to develop, and his heart was pushed over to the right side of his chest.

Normal lungs of a newborn are about the size of a lemon, his are the size of a grape. Because his lungs aren't working, at 3 days old he was put on a heart and lung bypass known as "ECMO". Two tubes were inserted directly into his heart through his neck. One tube drained all the blood out of his body and ran through an artificial heart and lung, then another tube returned the Oxygenated blood back into his heart.

He has never taken a breath on his own, he has never cried, and he has been on full life support at the Children's Hospital here. The doctors have given him a 5% chance of survival. For 9 days his heart rate stayed at 200+, (normal heart rates for newborns are between 120-130), and his blood gas showed his oxygen level was at 15, (normal is in the upper 60's).

On his 3rd day of life, they performed the surgery to fix the herniation and moved the organs (liver, stomach, large and small intestines, spleen) back down to his abdomen. After 2 hours the surgery was over and things went great! We were so happy, I dropped to my knees and thanked God. The next morning we found he had internal bleeding and had to go back in where they inserted a chest tube and opened the incision back up, where up until last Friday, remained open. Only a small piece of mesh held his organs in.

A week later his blood gas showed he had contracted Sepsis, which is a deadly infection. That last over 2 weeks before they finally got that under control.

My daughter in law was ready to remove him from life support on January 17th, from the advice of doctors, but decided at the last minute to change her mind. Since then he has done better, but the doctors have told us with the severe case of Pulmonary Hypertension he has, which is making his heart work MUCH harder than normal babys hearts do, there is no way he can survive. They are doing another ECHO on his heart today so we will know where things stand.

Needless to say, we are consumed with worry and pain. Each day that passes my heart and soul shatter a little more. I'm afraid when my phone rings it's going to be "the call". I'm afraid to go to sleep at nite for fear when I wake up he will no longer be in my life, but most of all, with each hurdle he passes, I'm afraid to get my hopes up because something else happens.

I have created a facebook page where I update his condition daily. This is for 2 reasons. One, we have found that many people would like to follow his CDH journey. The second is raise awareness of this horrible birth defect. If you would like the link so you may follow his progress too, please email me and I'll send it to you.


He means the world to me. And even one day without this amazing creature in my life is not an option. We need all the prayers we can get. No...scratch that....WE aren't needing the prayers......HE needs the prayers.


Thank you so much in advance! And thank you for letting me get this off my chest!

Pam~

Last edited by KayKay; February 9th, 2012 at 06:15 PM. Reason: remove identifying information for the safety of the child
  #2  
Old February 6th, 2012, 09:17 AM
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Mrs X Mrs X is offline
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Re: My Grandson is dying~

Hi Pam, there are just no words when a family goes through this, Prays for your wee man.
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Old February 6th, 2012, 09:30 AM
pamphillips01 pamphillips01 is offline
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Re: My Grandson is dying~

Thank you!!
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Old February 6th, 2012, 09:33 AM
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KayKay KayKay is offline
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Re: My Grandson is dying~

Welcome, Pam. I am so sorry for your family's pain.

I am going to lock this thread and I respectfully request that anyone interested in your FB page find it via Google rather than sending a PM to you to get the link. The reason for this is that I feel responsible for our forum members' safety. While you may be a legitimate person, I have no way to verify that and we have had rather sophisticated scam artists before.

I'm sorry to add to your heartbreak, but we are fairly strict with application of our forum rules which can be found here: http://www.friendsandfamilyforum.com...aq_forum_rules

My thoughts are with you as you travel this difficult journey.
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