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Jackson's Heart
jacksonsheart
.:::..:...... .::::

June 2008
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Jessica [userpic]
the latest

Hello,
 
Okay, here's the scoop and a ray of hope.  If you didn't know, he had the breathing tube put in again last night.  They had issues with keeping his lungs clear and he finally had enough and decided he wasn't going to cooperate with the suctioning they were doing.  He dropped all of his numbers pretty quick and they had to put in the tube.
 
This kind of forced Dr. Ghanayems hand a little bit into deciding what they have to do with him.  Right now, he isn't a canidate for a heart transplant.  They will be scoping out his throat and lungs sometime this weekend and then we will meeting with different doctors and specialists.  What we will be deciding is if we give him a trach.  A hole in his neck that goes right to the lungs.  Before I go on, back in February we found out he had malacia.  That's when he takes the deep breath and the airway closes on him.  The trach would bypass that area and then allow his lungs to improve while on a vent. 
 
The plan after that would be to see how the heart is.  It might improve itself or might become a canidate for a transplant.
 
It seems like there is only one positive and a whole bunch of negatives to this.  We don't know how much we want to put him through if it isn't going to help.  Sara and I want our little boy home with us so very much.  We also realize that with these choices, there isn't a guarantee for him recovering.
 
Sara right now is more positive than I am about everything.  I don't know if I'm just worn out or what the deal is.  We still are a great team and she is doing her best at keeping me on the upside.  I am better than I was the other day...we both are...now I'm just confused.  I wish the doctor the other day wouldn't of told us all the stuff he did.  It really took the wind out of our sail.  Each day that goes by and we can get more positive feedback from the medical staff the better I will feel about the situation.
 
Jackson right now is paralyzed again and on tons if meds.  He was moved back into PICU 23 and is back to being a heart patient rather than a patient with RSV and a heart condition.  With all of this stuff going on, he won't be coming home anytime soon and definitely won't be home soon if he gets the trach.
 
Take care and thanks for everything
Jake and Sara