Brave Mason

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

ONE DAY MY WORLD CAME CRASHING DOWN,

I'LL NEVER BE THE SAME.

THEY TOLD ME THAT MY CHILD WAS SICK.

I THOUGHT, "AM I TO BLAME"?

I DON'T THINK I CAN HANDLE THIS.

I AM REALLY NOT THAT STRONG.

IT SEEMED MY HEART WAS BREAKING.

I HAVE LOVED HIM FOR SO LONG.

I WILL NOT GIVE UP ON THIS CHILD.

I WILL LISTEN TO YOUR ADVICE.

I WILL GIVE MY CHILD ANY CHANCE.

NO MATTER WHAT THE PRICE.

I WILL LEARN ALL THAT I NEED TO HELP MY CHILD THRIVE.

I'LL EVEN USE THAT FEEDING TUBE.

MY CHILD MUST SURVIVE!

WILL HE NEED A LOT OF THERAPY?

WILL HE GAIN THE NEEDED WEIGHT?

PLEASE GOD, HELP ME DO THIS.

I WILL ACCEPT OUR FATE.

WHEN THE MONITORS BEEP AT NIGHT,

IT SERVES AS MY REMINDER.

HOW MANY PARENTS WOULD LOVE THAT SOUND.

TOMORROW I WILL BE KINDER.

AS ANOTHER ANGEL EARNS HIS WINGS,

I RUN TO MY CHILD'S BED.

I WATCH HIM SLEEP FOR QUITE A WHILE.

I BEND DOWN AND KISS HIS HEAD.

I CRY FOR THE PARENTS WHOSE HEARTS HAVE BEEN BROKEN.

I LOOK TO YOU WONDERING WHY?

OH LORD, I JUST CAN'T KNOW YOUR WAYS....

NO MATTER HOW I TRY.

AND YET, I TRUST YOU HOLD HIS LIFE,

AND GUIDE US THROUGH EACH DAY.

MY MIND SAYS SAVOR EACH MOMENT HE'S HERE,

BUT MY HEART BEGS, "PLEASE LET HIM STAY"!

FROM PACING THE SURGICAL WAITING ROOM,

TO SITTING BY HIS BED.

FROM WISHING FOR A GOOD NIGHTS SLEEP,

TO LEARNING EVERY MED.

FROM WONDERING, "WILL HE BE ALRIGHT?",

TO WATCHING HIM REACH OUT HIS HANDS.

WITH EVERY SMILE MY HEART JUST MELTS,

DESPITE LIFE'S HARSH DEMANDS.

FOR ALL WHO SEE THAT FADED LINE.

I LOOK TO THEM AND SMILE.

YOU SEE MY CHILD IS LOVED SO MUCH.

I WOULD FACE ANY TRIAL.

THAT SCAR I TRACE WITH MY FINGER

(IT'S THE DOOR TO HIS BEAUTIFUL HEART).

GOD MUST HAVE KNOWN HOW MUCH I'D LOVE HIM

(JUST AS HE LOVED HIM FROM THE START).

A HEART MOM IS ALWAYS A HEART MOM.

NOW WISE BEYOND HER YEARS.

FOR THOSE WHO HAVE ANGELS IN HEAVEN,

OUR HEARTS SHARE IN ALL OF YOUR TEARS.

EVERY DAY I WILL TRY AND REMEMBER,

I WAS CHOSEN FOR HIM (AND NO OTHER).

I WILL ALWAYS EMBRACE THAT BEAUTIFUL DAY.......

WHEN I BECAME A "HEART MOTHER"