1A

Porter had another episode last night.  They didn't have to do CPR this time but they did have to bag him and he turned blue.  In speaking with the dr and surgeon this morning they really feel that it's in Porter's best interest to be put back to 1A status on transplant list while we wait to hear from Texas.  Our doctors do not feel that the septal myomectomy is going to be beneficial to him at this point - they feel he is having some restrictive characteristics again along with hypertrophy.  We have asked if another cath would help figure this out - haven't gotten and yes or no yet but it wouldn't happen this weekend anyway.  The other shoe has dropped and we're yet again in an indefinite waiting game.  They say God doesn't give you more than you can handle and we try to remain positive as much as we can but we are reaching the "wtf" stage.  Not sure how much more we can take let alone how much more lil P can take.  He's such a fighter and so amazing.  I snuggled in his bed with him today with my arm around his head and my hand in his and every time I moved to stand up or move away so he could sleep he squeezed my finger so I just layed my head next to him as we know he knows when we are there.  

Comments

  • Michelle Walker

    Hang in there Meg! He's a fighter and so are you! Continued prayers to you guys!! Your friend, Michelle Walker

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