Saturday, April 17, 2010

Sad


Late last night I received the results from both Mason's biopsy yesterday and the DSA (donor specific antigens) blood test run pre and post Mason's IVIg treatment on Thursday.



I am sad.



Both were positive for rejection. Yes, that is right........rejection! I'm not putting that awful word in bold lettering, because I don't like bad news! I've been down the path of bad news too many times! My faith is being tested! But, I will persevere! I believe in miracles!



Mason's biopsy came back at a grade 3R -not good. The good news is (I'm trying to find the sunshine) they caught it early on. The doctors are hopeful they can turn this around with very intensive treatments. These treatments were started late last night. There is hope, but they are taking this very seriously.



Mason's DSA showed that pre and post his IVIG treatment he is fighting against 7 of the donor's antigens. So, the IVIg treatment did not work this time. Meaning, even after the treatment those antigens are still present in his blood. The day after transplant a cross match was run and everything came back at zero. There were no Donor Specific Antigens present at that time. Even though Mason's IVIg treatments the 2 months prior to transplant had gotten rid of all these bad antigens, there was a possibility they would return due to a very smart immune system.




Plan of action:
  • In the cath lab Mason was given high doses of 2 meds: 1) Lasix to help with fluid overload and 2) Methylprednisolone {Solumedrone-which is a 3 day aggressive anti-rejection medication. They gave one dose in the cath lab in case the biopsy was positive for rejection and now they will continut that.
  • Plasmapheresis was started late last night. It is a 2 hour treatment that he will receive for 5 consecutive days. In my own words, with a machine similar to a dialysis machine they take Mason's "bad" plasma (high in bad antibodies) and remove it from his blood and replace it with new "clean, good"plasma. The new plasma is mixed with his own red blood cells and put back into his body. (For more info on plasmapheresis click here.)
  • Following each plasmapheresis he will receive a 4 hour infusion treatment of ATG. This is similar to IVIg, but stronger. (For more info on ATG or Antithymocyte globulin click here)
  • Daily echos to check if the rejection is affecting his new heart function. No echo yet today, but yesterday's showed excellent function (more sunshine admist this awful storm) still with a slight leak in the tricuspid valve. (which now, after reviewing all his echo's, it looks like his angel heart came with it and that's okay. Very treatable when it is so slight.)
  • Continuing still on all 15 oral ( by g-tube) medications. He is not on any heart function meds though which is good.
  • PRAYER, PRAYER, FAITH, HOPE, AND MORE PRAYER
  • BELIEVE IN MORE MIRACLES



The doctors explained to me that the next 5 days are the most critical in turning this rejection around.



I need to go now and hold my baby's hand!

51 comments:

Justin and Victoria Nelson said...

yes, yes. prayer, faith, hope, and more prayer we most definitely will...
holding u close in our thoughts and prayers.
miracles DO happen.
love,
victoria

Anonymous said...

Prayers, hope, love and BELIEVE, just BELIEVE!

tesnjen at aol dot com

Shanna said...

You guys are in my thoughts and prayers. i will be fasting for Sweet Mason and your family. :( tears of sadness... Keep us updated. Remember to think positive and keep the faith. Heavenly father will bless you and help you through this!

Best

Shanna

Tam said...

Mason and your family are in my prayers! I pray he makes a full recovery and the rejection does stop.
Tamala Jones
Lehi, UT

Kimmie said...

come on mason, you can do it buddy!!! easton is cheering that this rejection will be stopped and turn around!!! you've come so far, keep it up.

summer...much love and prayers from our "srtanger" heart family to yours!

The Davis Family said...

Hi, you don't know me but I am a fellow heart mom. I have been following your story since it was posted on Staci's blog. My daughter also had a heart transplant on 03/20/2010 for HRHS. We are also experiencing rejection, thankfully it is mild so far. We have not done a biopsy, but she they discovered fluid around her heart and inflammation in her left ventricle and gave her another large dose of steroids. Most of it has gone away as of her last echo. Dr Everitt said rejection occurs 40% of the time and usually it's correctable! I am praying for your sweet son, and more good news to come! And I hope neither of us will have to use that awful word again!

Paul Cardall said...

We will not cease praying for you guys! D&C 121:8

Emily said...

Summer, I am praying for your beautiful boy and for you. I am so inspired by your faith.

Summer said...

Oh Summer! I will continue to pray for beautiful little Mason.
Continue to stay strong and remember God is holding you all gently in His hands.
God Bless you From one Summer to another!

Summer V.

The mom of 4 monkeys! said...

I will continue to pray!!!

The Simmons Family said...

Summer... we are praying!!! I'm sure you are scared sick and I wish there was something I could do. You are in great hands. I've heard that plasmapheresis is pretty effective and I pray that it does the trick!

Hugs and Prayers...

Andrea

Jennifer said...

You hold your sweet babys hand, tell him you love him very much and keep praying, as will we! GOD is very powerful and HE does perform miracles. Mason will beat this and grow to be an old man!

Always praying for your family....

Jen, Todd, Mason, and Dillon

Anonymous said...

Summer, just keep seeing that miracle!! Stay strong!! Mason is fighter!! Happy birthday summ! Keep smiling a lot of people love you and your family!!
Luv Stacy Gibson

allison said...

I just found your blog thanks to Andrea. Goodness you'll be in our prayers. Hold tight to your faith & know that you have a lot of people pulling for you!

Hollie said...

Summer,
I'm so sorry that you have to go through this roller coaster. I know how hard it is to be alone during stressful times, and I hope that you're able to feel the love and prayers that are being sent your way. I will continue to pray for you and for Mason, Heavenly Father doesn't limit the number of miracles that He performs!
Hugs,
Hollie

One Happy Heart Family said...

Please know we are praying and thinking of you and your family! I am glad you are seeing the "sunshine" in your storm. Sends lots of heart hugs and love adn prayers your way!!!

Chrissie

Mrs. M. said...

Praying!

Moffitt Fam said...

Praying, praying and PRAYING for you and little Mason!!

Bob and Joan said...

We have been out of town at a missionary conference. As we checked and found the word "Sad" that is how we feel too.

We will keep the prayers going and pray not for just Mason but his doctors too that every choice they make can be inspired and just right that this can be a strong recovery. Sending lots of love and comfort your way.

Michelle said...

Summer.. You are such a strong and amazing mom! I hope to be just like you! Our little family is praying for you, Mason, and the doctors. You can do this!

Kyle and Alli said...

Oh we are sad too! What a great piece of good news that they were able to catch this quickly and start some rigorous meds right away! We will add our faith to so many others that Mason will come through this responsive to his medications!!

cici said...

I wish I could hold his other hand, but I know it is being held by God. I am going out the door in a minute to Church and light a special candle and pray my heart out for your little miracle boy.
I just wanted to add to all the love on here before I do.

My daughter lives next door to twins girls that both had heart transplants as children. One had rejection, but is living proof that it can be overcome. She is now in her 30's and living life to the fullest. Hang tightly onto HOPE and FAITH sweet Summer.
GOD IS HOLDING YOUR HAND TOO!

Caryn said...

Prayers are with you guys! Hugs from AZ all the way to LPCH!

Pete, Alison and Charlie said...

I'm so sorry to hear that you've hit another bump in the road - we're hoping hard that it's just a little blip and that the doctors can sort it out very soon.
I've been following Mason's story for a while now. I am a fellow heart mum - my son Charlie is six and just had his Fontan surgery for HLHS.
Please know that we are thinking of you all, and keeping you in our prayers.
With love to you all - especially little Mason. xxx

Shannon said...

I am sending you all of my love and prayers.

Kristi Vega said...

All of my prayers and positive vibes will be with Mason this weekend. Thank you for keeping such a positive and faithful outlook! That is so inspiring and definitely will help Mason beat this!

Staci said...

You just BE with that sweet boy. So many you don't even know have had and will have you in their prayers!

Staci (angel Bridger's mom)

The Blairs said...

Still praying for you and Mason also. I hope things turn around quickly. I can tell he is a tough little guy.

Pamela Wiscombe said...

You just sit and hold your little Mason. We are sad to hear about this bump in the road, but pray that the Lord can comfort you as your family is a long way away. Find peace in knowing that all these beautiful heart kids are Gods kids too, and that he feels and understands your frustration, peace, anger, and pain. He is there to walk the path by your side, and yes even carry you in his loving arms when the times get so rough you can't walk anymore. Love Mason and reassure him there are so many that are praying for his well-being, for the doctors, for your family, the other heart kids, and most of all for you Summer. Hang in there, and remember after the storm there is always a rainbow. Let's go find it!! :)

Steph said...

All of our prayers, faith and hope coming your way.

Keri said...

still praying Sum!! we love you miracle mason!! hang in there, Sweet Boy!!

Connor my little frog said...

sending you our love and prayers....Well wish on a falling star tonite for you :)

Emily@Little Forever Family said...

Dr. Aagard, Jenny the nurse, and I were talking about you:how remarkable your are, Just know you will definitely be in our prayers, and I know that Heavenly Father has a plan for your beautiful family. I wish I could fast for you, but maybe I can ask those that can to fast in behalf of Mason. I can do that. Hang in there, and know there are countless people praying for you and countless heart buddies looking out for their little friend Mason. I will have a little talk with Ryker to keep a close eye on his friend!

Neldajay said...

Hi,
I will include him and your family in our prayers. Have faith in God!
` nelda

Neldajay said...

Hi,
I will include him and your family in our prayers. Have faith in God!
` nelda

Deb said...

Summer-

Praying for you and your family and sweet little boy.

Kerry and Chris said...

Remember,Jeffery R Holland said,"Heaven's kindness will never depart from you regardless of what happens...bad days come to an end,faith always trumphs and Heavenly promises are always kept.
.. Praying and Hoping for you, Mason!

BJHBHBB said...

Prayers coming your way from Texas... as the mother of an 8 year old heart girl, we know your hopes and fears. Please know we are thinking of you and praying for strength.

Jennifer said...

Praying every day.
{[hugs]}

Deana said...

Praying for you and Mason! Stay strong!

♥ Michele ♥ said...

Summer,
I know too well about this roller coaster you are on right now!! The only thing I feel like I can tell you is to hold on. Heavenly Father is SO mindful of you and your family right now and I hope that you will be able to feel some peace calming your soul during these horribly sad and anxiety ridden moments. He knows what will happen and we will all have faith that there is another miracle in store for our sweet Mason!!! Thinking of you every minute!!!

Michele

Greg and Heidi said...

Praying hard!

kurtis said...

:( We are also thinking of you guys. Sweet Mason, he has proven miracles in the past :) Hang in there.
HUGS
Mindi
Libbi's mama

Ryan and Hilary said...

Sending lots of prayers. We know Miracles happen!! We are a witness of Gods grace. "God will send aid to no one more readily than He will send it to a child—and to the parent of a child." Elder Holland. Hold on!

Munchkin said...

I will continue to pray for little Mason. My friend had the exact same thing happen to her when she got a kidney transplant. And everything turned out fine. Miracles are on their way!

Family Scads said...

Lots and lots of prayers. Our little guy had plasmapheresis last year and it was rough...to say the least! I will pray that Mason will tolerate it better than my Beckham did.
Keep the faith! Angels will encircle him and all of you.

Jamie said...

I can understand how sad you are. That's not good news, but like you said...you're faith is being tested. We will continue to pray for you. Our thoughts are with you daily!

Stephanie said...

We have been thinking about you and praying for you. We love little Mason. You are so strong, Summer!

Ali F. said...

You can do it Mason!

Dianne said...

I will continue to pray for Mason and your family. I am also asking family and friends to do the same. Keep the faith, I know our Heavenly Father is with you at this time.

g-ma-vicki said...

Keep faith...we have called him Miracle Mason for a reason. Lots of prayers going your way.