Wednesday, January 19, 2011

Our newest curveball

I believe I noted a when we were first told about the transplant option, Scott and I asked for a few second opinions.

Those were requested for the same day, and we received an answer from 2 of the 3 the next day.

The third we didn't receive until yesterday afternoon, and we were told about this morning.

When we decided to go ahead and list her for transplant, our initial reaction was since 2 of the 3 opinions were heart transplant, the 3rd would have to be something really really unique and different in order to make us change our minds.

Well, it was unique, and it definitely was different.

Boston Children's came back and said there is a small possibility that they would consider trying a double-ventricle repair on Annabelle.

That is, they would try to repair her valve and actually use her too-small left ventricle. Meaning, not only would she not need a new heart, but they would try to fix her WHOLE heart, not just use half of it.

They don't have enough information to make the firm decision, and they have asked for 2 other tests to be run on her in order to give a final "this is what we could to."

Needless to say, Scott and I have been completely blown away by this.

Now, on one hand, the tests they run could very well (and in the opinion of our current medical team, would...) rule out the option of the repair, thus leaving us with just the heart transplant option again. And the tests, while not extremely dangerous, do require deep sedation and things similar to a heart cath.

So what is a mom and dad to do?

I have three medical teams saying, "Transplant!" and I have one medical team at the top hospital for pediatric cardiology that would give us a chance at Annabelle living a normal life... with no fear of her heart rejecting and having to have a retransplant every so many years.

But at the same time... this new option is really risky and a very aggressive step.

We have a TON of questions still, and have only just been presented with this in very, very basic terms, but please pray for us as we make some very hard, hard decisions.

The other thing we have to consider, is that this would potentially mean that Annabelle would be moved to the Boston hospital (something we are still clarifying) and wow. That would... yeah. Not sure what we would do with that either.

So yes, please pray for us specifically for divine wisdom over the next two days. We have to decide today if we are going to do the tests by end of day today, and those test would be run on Friday. Preliminarily, we've decided to go ahead with the tests, as more data is never a bad thing, in my opinion. But I still need to talk to a few people and ask a few questions first.

I'll probably post more in the next few days when I know more, and when I can sort out all the fifteen-billion thoughts running through my head.

THANK YOU for your prayers in advance... we appreciate them more that we could ever express.

***UPDATE***

Spoke with a few of the cardiologists, including our transplant coordinator.

There were 2 tests they needed to do. One we can do here, one they feel would need to be done in Boston.

We've given them the go-ahead to do the one here (an MRI that will require sedation...) They are fairly sure that it will rule out this new option... but if we didn't at least do the test, we would always have the "what if" in the back of our minds.

So potentially on Friday (they have to figure out how to work us into the schedule) we will be going for the MRI.

In the mean time... I've told them that we are still definitely okay for a heart transplant and if one should come available... we are good with proceeding with that option immediately. 

21 comments:

Jason Wert said...

Praying!!!

T. Anne said...

Praying for wisdom. Our God IS an awesome God. =)

Kat said...

Will ABSOLUTELY bepraying for clarity for you guys. Be confident that the Lord will show you His will:

But if any of you lacks wisdom, let him ask of God, who gives to all men generously and without reproach, and it will be given to him (James 1:5)

Riete said...

What a difficult decision! I'm praying for God's wisdom and guidance for you. And I firmly believe God will show you what to do!

{{Hugs}}

Aleisha said...

NOTHING IS TOO BIG FOR GOD! Praying for you and your husband as you make this decision, and for Annabelle , through all.God Bless

Angela said...

Praying for you all!!

Sarah Forgrave said...

Wow. Praying.

Melinda said...

WOW! That's a lot to absorb. Praying for you guys right now!!

Patricia said...

I will be praying that the Lord shows you a clear path to take for little Annabelle regarding her heart needs.

Angie said...

Wow, big decisions...praying!! God is going to do amazing things!

Jean M said...

Wow - what decisions. Praying for you!

Hope's Blog said...

What a huge decision. I think additional testing is a good thing and you are right...you don't want to think about the 'what ifs'. I will be keeping you in my thoughts and prayers.

Tammi T. said...

Wow! Will definitely continue to pray.

Heather Best said...

I've been reading your blog and praying for Annabelle for sometime now. Just wanted to let you know that I'm praying for you as you seek the wisdom to make this new, difficult decision.

Anonymous said...

we were having group prayer at church. We were having prayer for the famlies here in Tucson. And then they asked to pray for healing and for protection over our friends family or our needs.
I stood in proxy for Annabelle we are still believing for a heavenly heart from God. We prayed for when her next test it will be made Whole from heaven.
I will continue to pray for widom and that he hold you and your family and keep you comfort.
I hope this dont sound strong. I just believe, God does what his word says. the doctors say one thing.we say thank you and then know what to pray, But doctor Jesus say's look at what i do. Annabelle will be healed for Gods Glory. He is using her she is a wounderful child. Thank you for sharing her.
Praying.
J

Keli Gwyn said...

Praying . . . for wisdom, clarity, peace, and definitive results from the MRI.

Sherrinda said...

I'm praying for open and closed doors, and that you receive wisdom from on High.

Heather Sunseri said...

Hi, Krista. I stopped by to tell you that you and your family remain on my prayer list. Your courage and faith inspire me with every post that you write.

Anonymous said...

I have been stalking your blog for a while now, praying for Annabelle and your family. I have not commented before but today I felt compelled to.

My daughters friend has a little girl with a serious heart defect. When the hospital (Albany Medical Center) told the mom that there was nothing left to be done and sent the baby (she's now 2) home with hospice and a death sentence, they requested a second opinion from Boston. The doctor's at Boston literally saved this little girls life with surgery in September and now her prognosis is good.

I will continue to pray for Annabelle, you and your husband, your family and your decision.

Shannan said...

Hi Krista,
I have been following your blog for a couple of weeks. I, too, am a heart mom and my son, Jamie (PA/IVS), has had 2 surgeries in Boston. They are VERY aggressive in Jamie's care, considering the nature of his heart. We have had nothing but the BEST care in Boston. With that being said, it is still a difficult decision and I will be praying for you.

Julie said...

Do you ever just wonder...where's the parent handbook that came with this child?? I guess the answer is it's that little black leather bound book...but sometimes that answer seems 'pat.' You know?

My baby of three is Annelise... her nickname is Annie...but I have called her Anniebelle from day one. I think of your Annebelle just about every time I call my little one's name. I will be praying that God gives you wisdom in your decision making... and knowing the answer when He reveals it. I'll be praying that whatever the outcome, He will see you through it. I'll also be asking that Annabelle lives a loooong and happy life!!

Hugs from another mommy in Central Ohio.
Julie
www.vibrant-designs.net