Friday, June 12, 2009

Tears and Fears



From the title of my post you can well assume today was not a "good news" day, but rather a very long tear filled day up at Primary's. Today was Mason's 2nd ECHO since the one in April that showed lowered heart function (in scarier words: heart failure). We have prayed and hoped over the last 9 weeks that his new meds would improve the function, but unfortunately this was not the path Mason's little heart has taken, and there was NO IMPROVEMENT in his valve leakage or ventricle squeeze today. So basically he is in true heart failure :( Words I have avoided and hoped would never describe our little Miracle Mason!!!




What now? I met with a nurse
practioner from the heart failure/ and transplant team. They started Mason on 1 more med Carvedilol which is also to help the squeeze (unfortunately it usually only has good results w/ heart patients who need better function in their left ventricle....Mason doesn't use his left ventricle.....that's the broken part of his heart....so he needs help w/ his right ventricle's squeeze.....basically, this is kind of like a last resort med). We had to stay for a couple hours after his first dose to monitor his blood pressure, because a side affect can be too low of blood pressure. His was fine. They also drew some labs (more tears for Mason and I both this time...he hates the lab...and I don't blame him) to get a base line of his blood work for our new heart team. And we will go back every two weeks to up his dose on the new med, monitor it, and begin working w/Dr.Everett.




Do we know if transplant is the answer? Not yet! Not everyone is a good candidate. Antibodies can be an issue I know. You can have too many sometimes. I honestly don't know very much yet. Just bits and pieces. They will also do more echo's and a heart
cath before discussing transplant seriously. So many questions! So much wondering! And now we just wait.......




I've had many tears of joy as Mason has blessed my life these last 18 months. I've had many tears of gratitude to my Father Above for allowing Mason to live at times when he was so close to returning Home. But today, I've had tears because I am honestly scared! I have so many fears! Fears of the unknown! Fears of losing my baby! Fears of what lay ahead! Fears of making the wrong or right choices for Mason! Fears of
adequately caring for my other children in the midst of Mason's heart worries...............oh, tears and fears!!!!




My heart melts as Mason smiles at me right now. He is
so happy all the time and has no idea why Mom is so very sad today.

20 comments:

Cassie and Chad said...

Oh Summer my heart is breaking for you right now! I am so saddened by what you are having to go through. Hearing you talk about his smiles and your tears is heart wrenching. I am sorry you are so sad. Please know that you are a strength to so many of us out here. Good luck with the road ahead, you are in our prayers. We love you guys!!!

Heather said...

The prayers of our family are with you, Marc, and all your kids! I will prayer that you can have the strength you need. You amaze me! Love you all!

Manina said...

Oh Summer, I don't have the words to express how I feel. I am so sorry that you have to go through this. It is so heart-breaking. Please know that our family is praying for you, your family and especially sweet little Mason. We love you.

cici said...

Oh sweet mom, your post breaks my heart. I will put Mason at the tippy top of my prayer list that he receives the correct care to heal him and make him strong. I believe in Miracles and God has one in store for your precious little boy.

Keri said...

Keep your chin up, Summer girl.
I love you and am thinking about you. I am so sorry that Mason's heart is broken and that yours is breaking too.
You are in my prayers, too and I wish only for a miracle for him.
xxxxx

Anonymous said...

sum,
It is hard to find the words to express my feelings. My heart aches for you right now. I will be praying in your behalf. Keep me posted. I love you sum
Laura Power

The Simmons Family said...

Summer...

I'm so sorry! I know the tears and the fears that you are talking about. If you EVER want to talk.. call me 480-558-3007 or email me andreanicolesimmons@hotmail.com

Mason and Owen are SO Similiar!! We are getting ready to introduce Carvedilol as soon as we get him on 60cc's of Captopril a day saftely. The antibody issues are just plain BLAH, and I pray that doesn't become an issue. If it does.. I can tell you that 4 of our HLHS friends with high antibody issues have all received 'PERFECT' hearts and not one of them is in rejection! :)

Heart Failure is hard to hear. Keep us posted!! PRAYING for you!!

Andrea

Kyle and Alli said...

Oh Summer,

My heart just aches. We were all hoping for good news. I thought of you all day yesterday knowing that I had intended on coming to find you but due to our crazy week, we ended up not being there. You need the biggest hug right now. It all sounds so scary and final, but we have heard great things about Dr. Everett and hopefully she will have some good answers in the coming weeks.

Ingram Family said...

Our thoughts and prayers are with you & your family. We hope for more miracles to come your way!

At our Whitt's End said...

Mark and Sum,
Please know that our hearts are so sad for you and what you must be going through. Our prayers are with you and we want you to know that we love you and the only consolling words we have for you is that everything happens for a reason and that it is in the Lords hands and that he will continue to bless you in ways that you might not understand, but are for your good. You are truly blessed to have Mason in your life and we are truly blessed to have you as our friends. We love you guys and pray for you to be blessed beyond measure.
Marnie and Boomer

Megan said...

Oh, Summer, my hear aches for you more than you. Please give sweet Mason so many hugs and kisses from us. The Lord is very aware of you and loves you and your sweet family so much.

Derick said...

Hi Summer:

This is actually Julia Woolf (not Derick). I'm so sorry to hear your news. I can't tell you how many times I've cried as I've read your blog and thought about what you're going through. Keep the faith! You are such a great example to so many of us as you go on this amazing journey and have this special little guy in your life. He melts my heart and I've never even met him. Know that many people are praying for you--people you don't even realize are praying for you (and reading your blog). We'll keep praying for another miracle for your Mason. You've made me realize how much I need to enjoy my own children. Truthfully, we never really know how long we'll have any of them with us. Thanks for making us all more grateful for the blessing of having children. I will not only pray for your little Mason, but for you and Mark and your family. I just know that your family is going to be all the stronger for what you are passing through. Please let us know how we can help you. Love, Julia

Gourley said...

Marc and Summer -

Our prayers will be with you continuously. Try not to loose hope however. We have had a similar experience with Carter. They performed echos for months and months telling us that his heart function is not getting better, and if anything it has gotten worse.

A short time later just before they listed him, they performed the cath. The cath showed us that Carter's heart function was better than they thought. The cath can see things tha the echo cannot. We will continue to fast and pray for you.

If you guys are up to it, we would still like to come see you sometime. Let us know if there is anything we can do to help.

The G Fam said...

Summmer,
Were your ears burning this weekend? The nurse Jenny and I were talking about when Mason was born and his crash, and being life-flighted. Jenny was asking how you were doing. I did not know all of this was going on, and I am so sorry! I pray that they can find a way to get him a healthy heart.
Heart hugs,
Emily and Mike

Jana said...

Summer,

I heard about your family from one of your darling heart friends.

Wendy from the famed Blue Lily Photography and I are trying to get a hold of you and need to do so pronto! We don't have your phone number, so if you get this message, please email me at themeanestmom@gmail.com ASAP!

Thanks so much!

Jana Mathews
AKA The Meanest Mom
www.themeanestmom.blogspot.com

Munchkin said...

I don't even know what to say. I am so sad to hear your sad news. I am hoping and praying for Miracle Mason. What a sweet little man

Gigi said...

The Lark Family loves you all so much and are praying for your sweet boy...and you too!!!! Love you!

B Ginn said...

Summer,

Our thoughts and prayers are with you and Mason.

♥ Michele ♥ said...

Summer, I just now read this on your blog and I had no idea! I know how scary it all is!! We just want the pain and anxiety to be gone and never come back don't we??

I guess the only thing I would say is that I think our challenge is to try and embrace what we can't control, good or bad and trust in a loving Heavenly Father. He will be there for us, even when the times get to tough to bear.

I will talk to you soon.

Michele

MendedHeart said...

You are on my prayer list. Hugs