"Fifty shades of grey"

I was able to meet with several people last week from the cardiology team including a meeting from the Chief of Cardiothoracic Surgery, Dr. Fraser.  He was fantastic.  The consensus is that Porter doesn’t have any black and white to his case~ everything falls into the grey area.  His obstruction is not where most obstructions are, his mitral valve is thick and “yucky”, he has Noonan Syndrome, he’s on the ventilator, etc etc etc.  Everyone is taking the utmost thought in Porter’s treatment.  It was told to us that with the thickness of his heart, if it were to stop beating in surgery there was great concern about getting it started again.  We had heard this at UNC as well. It’s such a tough predicament as you have heard us speak of before.  It’s all very complicated.   They decided they wanted to try to wean his diuretics and see if they could get him completely off of them.  I believe we tried this at UNC and he didn’t tolerate it well.  Porter handled the wean well until this weekend.  He was off two of his diuretics and today was going to be the last does of the 3rd one.  He’s also been gaining weight pretty quickly since the wean began and even though we want to beef him up we don’t want him to be fluid overloaded.  He’s breathing faster, his HR is up a little and he’s been more lethargic over the last few days. They decided not to wean the last diuretic and in fact added the Lasix back in twice per day.  Plan for this upcoming week is an Echo Monday and Cardiac Cath Thursday.  

Porter had his G-Button placed so the foley tube no longer hangs out of his romper. He did great with the procedure.

Porter has been doing great with PT and OT.  They broght in an exersaucer for him to sit up in and let his feet dangle so he gets used to putting pressure on his feet.  He has been reaching for the toys on it with some assistance as well.  I bought a play mat that has a bunch of things that dangle that he can grab and he's getting really strong!  Thank you all for your continued prayer and positive thoughts!


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