Jen and I met with the doctor today and were given the two options we had hoped for: two different kinds of surgery.
One is to essentially add a man-made blood passage for Zoe's heart called a shunt. It's a surgery highlighted in the movie "Something The Lord Made."
The shunt is a beating heart surgery that will take less out of Zoe to perform. It's not a perfect surgery - being manmade, it might push too much blood through. Medicine might be needed and the surgery isn't permanent.
The other surgery is the open heart surgery we discussed last November before Zoe was born. It requires a stopped heart and a heart/lung machine. It's obviously more invasive, more intense with a longer, harder recovery. Once completed, Zoe wouldn't need heart surgery for her Tetralogy any more.
Jen and I will have to make a decision by month's end and then, after a review of her other organs and body functions and some meetings, it sounds like they'll operate.
Dr. Frommelt will not be performing the surgery, but has offered to be present while it's taking place to act as a conduit to what's going on. There will be many moments of concern, whatever direction we choose. The surgeon who has offered to do the surgery realizes the high risk involved and will perform it nonetheless.
One big concern to Dr. Frommelt is Zoe's thickened heart. At this time, medicine doesn't know much about what triggers a thickened heart. It can be a side effect of Trisomy. One of the side effects of thickened heart is sudden death, which happens with no warning. Sometimes people who have the condition die before it is known that they have a thickened heart.
So there you have it: a lot to pray about. A decision to make. A thickened heart. A surgeon willing to try. A little girl who is alive today because of God's will and your prayers.
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Huge decision, sounds like there are pro's and con's for both, i will be thinking of you all and hope you find some strength in the fact that it is amazing and a credit to you guys, Zoe, the Dr's and surgeons that you have a choice to make!
ReplyDeleteGive Zoe a cuddle from her fan from down under ;0)Barb
After reading your message I did not know how to respond. What do I say? What can I do? Then my bad habit popped up..I said to myself, well I guess the only thing we can do is pray. The only thing?!?!? Are you kidding me. We well wish others, we give out as many good thoughts as possible and THEN we pray.
ReplyDeleteThe hardest thing I do, is pray and give it to God to do the rest. There has to be something I can physically do? Run races, play ball, jump up and down?!?? I would do all of these ten times over to make things better. To make your biggest decision, what to wear.
The unknown is not a good feeling. So, I pray that the Lord comforts you and gives you what you need to to make a decision and a feeling of confidence that your decision is the best for ZOZO.
God's Blessings,
M
I have joined Team Trisomy with Michael Hennessy and will be doing my first Ironman in 2013, but in the mean time will be doing all my triathlons leading up to that my Ironman in the name of Trisomy.
ReplyDeleteI will definetly be praying for your family and your precious Zoe.
I cannot ever imagine how hard it will be to make the decision you are having to make.
You are in my thoughts and prayers.
I have written the Dr. Phil show and the Bonnie Hunt show telling them about Trisomy and about Michael and now need prayer that the right person will read the emails.
You can check out my blog at www.mommymeepa.blogspot.com
Take care my friend.
Melissa
God does His best work in the unknown areas of the lives He created. He will guide your decisions and I pray He gives you much peace in your hearts. Zoe is Gods miracle living her life here on earth, in His hands always, proving that her life is more than valuable because she exists. We all have so much to learn about life from this precious little girl. I know I do.
ReplyDeleteLove and Prayers, Laurie in Ca.
Although it's a huge decision to make, and it's difficult to know what is best, I am so glad you have found doctors willing to treat her heart. I remember your post about the issue of possibly not having anyone willing to even consider it. That these doctors are willing is an answer to prayer.
ReplyDeleteI thought they told us that thickened heart was something that just kinda resulted from the Tetrology. I don't know which surgeon you're going to be having, but I have been AMAZED (oh, beyond amazed) with what God accomplished for my daughter through Tweddle's skilled hands. That's no help with a decision. I'm just glad that you're at Children's, because they are great.
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