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Liz Stokes


Sitting here hunting the internet for signs of hope, signs for a promising future for Carter. Why? Because he deserves it. They were able to successfully perform the biventricular repair to his heart. It is now two chambers instead of one. The surgeons went to take him off of bypass after 16 hours and he wouldn’t have it so instead of stressing his body out anymore, the team decided to put him on ECMO and allow his heart to rest. No one knows if his heart will start working again. There are parts of me that wish we could go back and try again, knowing what I know now. Push for a PA shunt. Push for the Glenn. But how was I to know?

I finally got to see him around 8a Wednesday morning. I walked in and lost it. It’s too much to take. I wasn’t expecting to see him awake and coherent. He’s looking around, holding hands, reacting to our voices, kicking, trying to turn over. He’s our baby just part circuit.

All the news we had been given was rough and not promising but we’re told to wait things out.

Wednesday he had to have his chest washed out. Which is fairly typical of cardiac kids on ecmo.

Thursday we were back to the OR. This child had a clot in his left ventricle they needed to get out asap.

Friday back to another chest wash. It’s relentless what his poor little body has been through just trying to keep him alive. I’m starting to feel very selfish but at the same time doesn’t this little boy deserve a childhood like mine? Hasn’t he earned it after all he’s been through?

The goal is to keep his heart resting all weekend and not touch him until Monday.

God has us.

We cry out to Him daily sometimes every minute.

We’re looking for his art line to start moving so that we know he has electrical function. If that doesn’t happen he may need a pace maker put in until we can make it to transplant. That is if the transplant team approves him for a transplant.

The hard part is dealing with the optimistic doctors and the realist doctors and that everyone has their own opinion of how to treat Carter. All I know is that we’re looking at a long hospital stay regardless of the situation.

I’m rambling and this is unorganized but I’m not sure what else to say or how to explain the options that are available to us.

What I do know is that NO ONE IS GIVING UP ON HIM!


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