Wednesday, July 15, 2009

Decisions, Decisions

Well, as many of you know, we met with an orthopedist at Duke yesterday. Come to find out, he's actually a pediatric orthopedic surgeon who, everyone tells us, is "the man we need". That being said, he would like to do exactly as his title states: surgery.

Ethan's condition is called "congenital absence of the radius". It's not likely that you'll find much information if you Google it, which we've figured out after months of searching. There just doesn't seem to be a lot out there, and what we do find doesn't really relate to Ethan's specific condition. However, we got some good information yesterday from Dr. F and now we have a decision to make.

We have two options. The first of those is to do nothing. We would let Ethan grow and develop as is, learning how to make the best out of his special hand.

The second is to start a series of casts that would prepare his hand and arm for surgery. Those of you who have seen Ethan's hand, whether in pictures or in person, knows that it turns inward. The casts would gently stretch his hand outward, then the surgery would place his hand at the end of his ulna. He would more than likely lose the "thumb" he has now since it's not functional. Dr. F would like to do this surgery between 6 and 9 months of age (but probably closer to 9 months due to Ethan's heart condition). That's only 5 months from now!! After that surgery, we would then have the option to do a 2nd surgery much later down the road that would make his index finger function like a thumb.

I have to admit, I'm still in shock. I had it in my head that there would be no treatment options, but wishing that there were. Now that I know we have an opportunity to help Ethan, it scares me! I'm so afraid that his heart won't be strong enough to handle ANOTHER surgery. We plan to talk to his cardiologist next Tuesday about it all. Deep down, I hope he gives us the green light and says "absolutely". I want so badly to be able to "fix" him. I want him to be able to catch a baseball, or hold a fishing pole. One day, I want his wife to be able to put a wedding ring on his left finger. But I'm scared and sad to think that those things might not happen. If we were to take his heart out of the equation, I would send him to the OR tomorrow. But the reality is that everything we do now has to take Ethan's heart into consideration and, given the choice, we would obviously protect that over anything else.

I continue to pray for the restoration and healing of Ethan's heart. Now, I pray that we would be wise about doing anything that may compromise that process. We still need, and covet, your prayers. The truth is that, yes, we've come A LONG way but I'm constantly reminded that we still have a long road ahead of us. Thank you for walking with us so far; please continue to stay close.


Lisa said...

We're all still here and praying!

Becca B. said...

Praying for God's grace over you from Arkansas!

Jessica Davis said...

I, along with hundreds of other people, still continue to pray for Ethan daily. I feel if God knew that Ethan can't handle this, there will be big red lights. (remember when we oh so badly wanted him home, and everything God did to prevent him from leaving Duke before he was truly ready??). I'm sure the Cardio will have lots of answers for your questions and a little more piece of mind for you and Jeramie. I can only imagine how tough it is to make these decisions but just go with what God has planned..and trust me, we all see the signs.
*side note..Jerry actually went to school with a guy who had Ethan's hand/arm condition..and he had NO trouble playing (and bringing them to the finals) on his baseball team! (and bringin' home the ladies apparently..*
:) I love y'all VERY much and I can't wait to see you so soon!

Jamie Fenley said...

Joye, we pray that the right decision will become clear to your family. Ethan is the man!

Kendra B. said...

You guys are still in my prayers! XOXO

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