There were a few changes today. Some good news is that Braden's pneumonia is beginning to clear. If he can get his lungs free of infection then we can move towards getting him off the ventilator. Which means we could hug and kiss on our sweet man and he could enjoy some of the little things he loves so much. This is not to say that this is anything more than a goal. As we are still very much in limbo and things could change in a moment at this still very critical stage.
Our meeting with the Cardiologist was strictly for information. As Stephen said earlier we are both struggling with the unknown aspect of this journey. What we do know is that Braden's heart is not functioning well and that something has caused it. They have given us two medical terms Myocarditis and Cardiomyopathy. Myocarditis is often caused by a virus and can be reversed or the heart can go back to normal once the virus is gone. Currently this is the most likely diagnosis based off Braden's history and the current symptoms his body are displaying. However, as with most things there is also chance the virus could have permanantly damaged the heart. It is less likely but still a concern. If Braden's heart is permanently damaged or if the heart has just for some unknown reason developed the Myocarditis or Cardiomyopathy then depending on the severity can either be treated with drugs or worse case scenario a heart transplant. So we are still in a very terrifying and fragile position but at least we have something to HOPE and pray for... we obviously want the best outcome and feel most certainly that Braden deserves the best outcome.... So please continue to pray that Braden can fight this virus if that is what it is and that it does not cause permanent damage to his heart. We know at a moments notice things can change and even though Braden had a good day he can still have a bad one....
They have started to treat Braden as if he has a virus and hopefully we will start seeing improvement in his heart function. I am home tonite so I can get a decent nights rest and spend time with Grayson. Stephen is with Braden and they are spending some quality time together. Hopefully we will all have a peaceful night. We appreciate everyone so much for their continued support and prayers. Right now all the love being shown to Braden and our family has given us much needed strength ...
Friday, May 20, 2011
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Braden
3/11/08 Both eyes open. Taken with the lights down and no flash. He won't open them otherwise.
Braden
2-4-08 Sometimes it's just too hard to get a non blurry shot. He is so small. But, this is a picture without tape on his chin.
Kaleigh
1-21-08 with both eyes open. Mommy had a hard time with the camera so my apologies for the blurred photo.
Braden
1/20/08 Little Kaleigh's photo last nite didn't come out. They had her in the dark so it was difficult to get a good shot. :-(
Kaleigh Grace
1-19-08 She doesn't look so comfortable but they had just flipped her back on her back. She would rather be on her belly.
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About Me
- Our little Miracles
- This is the story of an amazing set of twins that were born 16 weeks to soon and their little brother Grayson. Kaleigh Grace who lived an amazing 13 days and we miss daily. Braden our super hero who is now 4. This is our journey in parenting with challenges above and beyond the norm.



1 comment:
Stephanie and Stephen, My thoughts are with you as you watch Braden fight so hard to overcome this. Prayers for wisdom so the doctors can swiftly identify and hopefully fully reverse any damage.
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