Sunday, April 17, 2011

Katie-bug's Heart

This post is a request for prayer. Two years ago this week, our little Katie-bug had just endured open-heart surgery. The surgeon had hoped to do a full repair of her very defective heart. It is on the wrong side of her body, turned around backwards, has a huge hole in one ventricle, and some other defects that I can't even remember.

When she went into surgery, the surgeon wasn't sure if he could do a full repair or a 'fontan.' The fontan is a procedure that leaves the heart with only one working ventricle. The heart is no longer a pump for the body. The blood actually flows through it by reaction to the squeezing muscle. So it is actually pulled through the heart rather than pumped through the heart.

Crazy, huh?

Well...after we came to Boston, the cardiologist here has been looking over her records. When SaraGrace was there in Feb. for her appendicitis, the cardiologist came to talk to me about Kate. He said that he and one of the surgeons had been going over her test results and felt that they would have made a different decision about repairing her heart. The surgeon is pioneering a surgery to fix hearts like Kate's. He wants to explore the possibility of doing a full repair of her heart.

This is good news but also very scary news.

Good because, of course, a full repair is AMAZING news for Katie! Scary for several reasons... One, any open heart surgery is risky and this surgery would be even more so. Our memories of Kate looking like this, are still fresh.
{Kate on April 15, 2009}

Two, because the recovery is very, very long. As in 3-5 months IN the hospital. Yes, months.

I have no idea how we would manage that, nor do I have any idea how it would get paid for.

On the other hand, how could we not allow Kate to have the surgery if she is a candidate? A patient with a fontan is quite likely to need a heart transplant by age 20-30, or, best case, be on a host of medications to keep the heart functioning.

It is not a surgery that can be put off. If she is a candidate, it would have to be done this year. The older she gets, the less likely she would be a candidate.

So....

Tuesday morning, Kate is going to have a heart catheterization and some other tests. Our prayer request is that God would show the doctors clearly what recommendation they should make to us. We are sooo hoping that we will not have to make a difficult decision about whether or not to try the surgery. We know that no doctor can give us any guarantees on outcome, but we are hoping that the direction will be obvious.

She will be in the hospital overnight. Fun spring break for her. Not.
{Although spending the time alone with Mommy IS a treat for her.}

24 comments:

Kim K. said...

We're celebrating Josie's open-heart surgery Anniversary this week too. I remember every little step of Katie's surgery/recovery and how we found each through Mott's Hospital. Please know that I will be thinking of you on Tuesday. HUGS!!!

Kimberlie said...

I will pray for you and for the doctors and mostly for God's will to be made very clear. Hugs to you Karin! I think about you guys all.the.time. :)

Lori said...

Oh, Karin. I cringe at the thought of little Katie going through all that again.

I will PRAY with fervor that God gives you VERY CLEAR direction on what's best for her.

Keep us updated!!

sara said...

oh, Karin. I know this is so scary. I am praying for wisdom and clear direction for her doctors.

Sharon said...

How exciting to think that Katie's heart could be repaired, BUT scarey at the same time! We will be praying. I know God had this all figured out. Hugs to you all!

mom2-4boys said...

Karin,

We will certainly pray for Lil Miss Katie Bug!!! Also, if there is anything I can do for you please let me know. I live approx 1 hour away and will help in any way that you need me!!!

Tracey

:)De said...

I too will pray with you all as you make decisions. GOD has a way of opening doors for us. Wishing you peace.

Tesseraemum said...

Wow, We will be praying for the right path for Katie. What an opportunity to save her from a transplant down the road..If it is meant to be God will provide and her stay will be miraculously short!! If I lived closer I would certainly volunteer to stay with her!
God is getting her all fixed up now..He must have some big things for her to do when she is older!! Sheri

connie said...

Oh, Karin, I'm praying for your family! What a difficult crossroads. May the Lord guide you clearly and unmistakably.

James, Dawn and Family said...

May you feel the love and peace surrounding you and Jeff. GOD knows the plan and HIS gentle voice will lead you!

Chinamama4 said...

I've been a lurker for a long time, but wanted to let you know that I will be praying for your family, the doctors and especially little Katie-bug! May God's Will for her be made perfectly clear to all...

michael said...

Karin, I am praying for you guys. Karen S

Shelly said...

Praying: may the Lord God give the doctor's hands His healing power. May He grant you and Jeff His clarity and wisdom in the decisions ahead. May He fill you with His peace and strength, providing for your every need. Thankful that the God who made Kate has a perfect plan.

(((HUGS)))

Jo's Corner said...

Oh, Sweet Kate! Bless her heart...literally! I'll be saying some specific Prayers for kate and your family. For Wisdom on the parts of the doctors and for you, as parents making a huge decision for your girl. Love to you all! ~ Jo

Cynde said...

Hi Karin, I love following your blog. We have had 3 children go through a fontan. Remember Ji Bei? She is doing incredibly well, was in the hospital 14 days. Our 4 year old just had his 5th open heart 3 months ago. They did a fontan and he was released after 11 days. It was amazing as his heart is very, very complex! Today he is so healthy and shows no signs of the cynotic spells he always had. Feel free to call me anytime. Our Dr. actually is very familiar about Boston. He studied under Dr. Norwood. Praying for the doctors to have wisdom and clear direction! Blessings, Cynde

Charissa said...

I will definitely be praying for God's guidance and wisdom as you and your husband have to make a decision. That picture of her in 2009 makes me want to cry so I can only imagine your agony over the thought of going through it again. Praying...

Theanne and Baron said...

Prayers for Katie...prayers for the doctors and you and Jeff as you make decisions regarding her heart.

Prayers for a sucessful catherization that will reveal the things that the doctors need to know to make their decisions.

God bless you all and keep Katie and all of you safe!

Chris said...

That is when I started reading your blog...
Prayers for you all...Dr's mom and dad and Katie

Adeye said...

Absolutely, friend, we will pray...trusting that the Father will lead and guide you in these decisions.

Keep us posted and let us know how to pray specifically.

Love you.

David and Janet Hurley said...

I cannot even imagine how tough this must be. We are praying for wisdom for the doctors and you. Most of all, that the answers be obvious, and you have peace.

trustandobey said...

Karin,
Wow, I thought all this was behind you after what Katie went through a couple of years ago. I am so sorry to think of your family going through all this but it may be an amazing opportunity for her. Praying for clear direction as to what to do.
Lisa

Meredith said...

Wow! 2 years already! I remember those days. We will be praying for all of you as you follow the Lord's direction and for His peace on you all! Love to you all!

Anne Devlin said...

Oh wow Karin! Praying God would open door where he wants them opened and that if this is His will for Katie, He'd make it really clear. Also praying that you will feel His comfort and peace as you consider it. I know it must seem so scary considering how recent her ordeal doing the fontan was... hugs!

Gayle said...

Karin,

Would you be so kind as to email me the name of the surgery? Our little Gracie was to have the fontan last March at Mayo and the day before surgery was scheduled, they decided against it--just too risky for her anatomy. She is at a point where she needs something done and the options aren't good.

I am praying for you and the decisions in your future!

Gayle glopp@myclearwave.net