Sunday, April 18, 2010

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"

16 comments:

Justin and Victoria Nelson said...

my friend,
continued love and prayers going your way. happy belated birthday. you are a superstar, and God knew exactly what He is was doing when He made you Mason's mommy. those nurses will take care of you and your baby boy...as they did for our family.
i stopped by yesterday to drop off a card for you. you had stepped out and i was telling the nurses that i hadnt even met you, but you were my friend - my heart friend. =)
please let us know if there is anything we can do.
we continue to lift mason and the family up in prayer.
love,
victoria

The Simmons Family said...

Keep finding the sunshine!! You are both in our thoughts and prayers often!

I had to chuckle at you being that mom that never leaves the hospital.. I am the same way. Although, I don't know how you can survive on the LCPH food... it's so terrible!! I'm sure you discovered that by now.

Give Mason a squeeze from us and I'm so thrilled that his function is excellent!!

Praying for PEE too.

Kristine said...

You are a wonderful heart home. Just found your blog today and am catching up on sweet Mason's story. I'm mom to a heart angel, Cora.

"One Mommy" said...

Praying for Mason and his Mommy and Family! Sometimes we wish we understood why God's plan is so different then ours and why we must have such a stuggle before the light at the end of the tunnel.
Praying that with each new day you might see that light and that with each new day you will fill God wrap his loving arms around you and Mason and your family.

Keep looking at the positive in this Mason is a Miracle and Miracles really do come true!

Hugs : )

M's Mommy

Shirleen said...

Oh my gosh Summer! I saw you yesterday and I didn't even know it was your birthday! I feel terrible! I'm glad you got the best birthday present any mother could have - a new heart for your darling, brave little boy. Talk with you soon.

Love,
Shirleen

Pamela Wiscombe said...

Summer-
so glad to hear there are little bits of rainbows coming around for you. We continue to pray for all involved and hope you can be strong. ITs a long journey, but your little Mason is amazing. His smile melts the heart of all who see it. Love you Summer and MAson. :)

g-ma-vicki said...

Prayers are coming your way from places you cannot even imagine and I'm sure he has supporting guardian angels there as well. Many pieces of the puzzle that will make him whole are coming in positive- I know you are all emotionally and physically exhausted My daughter will be at Lucille PAckard in a couple weeks with Owen...she will be so happy to meet Mason's mama.
Love from Owen's Gramma

Jennifer said...

That is a beautiful poem.

I told my kids about Mason last night and asked them to remember him in their prayers. It was the sweetest thing to hear my 4 year old little girl tell Heavenly Father "Thank you that Mason can get better" when she said the blessing on the food today. Ik now that maybe you don't feel so strong right now, but you and Mason are helping to stregnthen our family.

maggie said...

Many prayers for Mason coming from Minneapolis. In Christ, Maggie

kdance10 said...

Oh my gosh i love that poem, especially because i too am a "heart mother". We are thinking of precious miracle mason today as we do everyday. Keeping mason and your family in our prayers daily. Keep fighting little mason.

Sarah and Will Carver said...

Found your blog through the Simmons Family blog. My daughter Callie is also in the CVICU at LPCH, she just had her 5th heart surgery. Just wanted to say, I am praying that the Lord gives you the strength you need to be there for Mason. The Lord will see Mason through this, what a blessing our heart babies are:)

Rachel Lund said...

Happy Birthday Summer--I knew it was any day now!! I hope you got to smile at least once on your birthday, and an even better present of seeing Mason smile! Mason is a lucky boy to have you for his mother! Wishing you many happy days ahead!

Bob and Joan said...

Thank you for the beautiful poem to lift our spirits as we pray for Heavenly Father to lift yours and Mason's. Today we wrote to our children and they and their children will be praying for you also. Many of us will also be joining your fast for the success of these lastest treatments. We are in India, one son and family live in Scotland, another son and family are in Virginia. Many daughters are in California from San Francisco to San Diego and one daughter and family live on Oahu.
So from half way around the world, 45 cousins and their friends who read their blogs will be adding their prayers and pleading with "heaven" for a healthy, long life on earth for your little brave Mason.

Mindi D said...

What a sweet poem, i love it :) Keep on hangin on, the ride will be over soon and you can all be together as a family again. Go Mason, keep it up buddy!!
Mindi

rudysbeat said...

Praying for Mason and you all during this time. Hang in there!

Peace and Comfort,

Rolf and Trish

The McKell Spot said...

I am 36 years old and I will be listed for a new heart in a couple of weeks in Salt Lake. My family and I have followed little Masons story for a couple of weeks. I just wanted you to know how much of a wonderful example both you as a strong woman and Mason as a kindred heart spirit are to me. Thank you for sharing your sweet little boy with us.
We keep you in our prayers,

Holly Mckell