I must say, Mason is my hero!
He is so, so brave!
With only a few tears every once in awhile he has been tolerating every thing so well during this most recent set back. I've cried many more tears than him.
So far day 1 and day 2 of the plasmapheresis (it is about a 2 1/2 hour treatment in the evening) and the ATG (4 hour iv infusion immediately after the plasmapheresis) have gone very well. He has had no adverse side affects. Although, we will not know if it has served it's purpose until after all 5 treatments. They will check his antibody levels early Wednesday morning. And a biopsy on Wed or Thursday.
Yesterday, Mason's echo was beautiful!! His heart function is still excellent! (That was the best part of our day.) He has not had today's echo yet.
Poor little boy is very swollen and still retaining too much fluid. He is a puffy little marshmallow. The docs said that possibly some of his meds have not been agreeing with his kidneys and can even have a toxic type of affect on them. They've been switching meds and adding meds for kidney support to help him pee this extra fluid off. Finally this morning it looks like his kidneys are doing a better job! Rejection can also be attributing to his fluid overload.
Mason's heart rate and blood pressures are in a very good range, which means his body is handling all of this very well. That is great news. (See, I am trying to find the sunshine.)
I think after sleeping and eating here for 18 days straight now (and even on my b-day yesterday) the nursing staff is thinking of giving me some scrubs and hiring me!! No, really I wouldn't want to be any other place right now. This is my mission right now, to help my sweet baby get healthy enough to bring him home with his new heart.
Loves to you all! We couldn't do this with out all of your prayers and support. Thank you to those also fasting for Mason this day. I'm tearing up with gratitude just thinking about it! I do have faith in a miraculous recovery. I leave it in the hands of Him who sends miracles and in the hands of all our amazing doctors and nurses!
Here is a poem I love written by another heart mom.................
WHEN I BECAME A HEART MOTHER