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  #1  
June 25th, 2008, 05:28 AM
Platinum Supermommy
Join Date: Aug 2005
Location: Atlanta, GA
Posts: 24,588
I hate to bother you all again over this but it is just breaking my heart This is the baby that my cousin was the surrogate mother for. This family tried for well over 10 years to have this baby. He was born healthy with no problems at all. He caught the "super-bug" (I think that's what it's called). He has gone downhill since that first day in the hospital Here's what my cousin wrote today:

Day 35 on ECMO Machine; Day 42 in Hospital:

We need lots and lots of prayers. Faith is all we have. He is a miracle baby, and I know God has plans.

Yesterday, we had a heart-to-heart talk with the doctors. They insisted that Porter had to come off Life Support (ECMO) today. The risk with the fluid around his brain while he is on the Hepron (blood thinner needed for the ECMO machine) was too dangerous. We went to the hospital today thinking this would finally be the day that he can move forward.

Well, they tried twice today -- and he coded twice.

The doctors came to the conclusion that he is not yet ready. If he comes off now, he will die.

After many consult sessions the doctors then came to the conclusion that they must get even more aggressive with his lung treatment if he is going to come off the ECMO before something happens to his brain. They have been doing everything possible, but doesn't seem to be working. They are not sure if his lungs are permanently damaged from the Staph. This is not something you can tell on the XRAY. It may show the lungs are opened or closed, but not the functionality of how the Oxygen is being processed.

His Left Lung looks pretty good on the X-Ray. His Right Lung is completely closed up. The lung damage due to the Staph is tremendous.

In order to continue to push Porter off the ECMO machine, they are increasing the pressure on the Oscillator by 1 every 12 hours. It is at 26 now, and the maximum is 30. That means within 36 hours we should know something. The doctor said that it is "likely", and he expects that Porter will experience pneumothorax (lungs bursting). However, they do not know what else to do. IF Porter is blessed and makes it to 30 without bursting his lungs or experincing another brain bleed... then they can try the 'weaning' of the ECMO machine again. If that fails..... then they can, as a last ditch effort, try "Surfactant". A non-proven chemical that would hopefully assist in opening the lungs. The danger is that it would naturally go to the "good part of the lungs"; therefore, putting him again at risk for pneumothorax (bursting of the lungs).

So, we now have 2 very high risks: the pneumothorax (which is likely); and blood in the brain (which is not a matter of "if", but "when" on this machine). Both of which will probably kill him.

If either of these happen, no surgeon will operate because of the Hepron. Tubes must go into his lungs, and his head would have to be drained. The surgeons have already made it clear there is no reason to even try to operate. The PICU team said they would try..... but, have not ever been successful, nor is surgery their expertise.

So, all we have left is prayer for this little man.

When I asked the doctor today if this is the treatment plan he would have for his son....... he said "no". He said that he would have let him go a long time ago; however, because he has seen our FAITH, and believe miracles can happen... he is doing everything that he possibly can to give Porter enough time to pull this off without challenges. He said every other hospital would have made us make a decision a long time ago.

Please pray!!! We love this baby and need your prayers. I want to show this doctor what FAITH can do!!
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  #2  
July 1st, 2008, 08:17 AM
m_westbro's Avatar Platinum Supermommy
Join Date: Jun 2005
Location: Texas y'all!
Posts: 17,144
Oh Rebecca, he is in my prayers! Any update this week?
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