Tuesday, March 10, 2009

Update on Ethan

Wow. What a long past few days this has been. Thank you so much for the hundreds (and I mean hundreds) of calls, e-mails, messages, etc. I wish we could respond to all of you, but it seems like there's just not enough time in the day to maintain any normal sense of living right now. Please know that we love hearing from you, and knowing that so many prayers are being sent up on behalf of our little boy is SO encouraging.

Here is what we know about Ethan so far (the kinda short story):
-ultrasounds performed on his spine, head/brain, abdomen, and kidneys have all come back NORMAL. This means all other major organs are functioning the way they should be!

-his heart condition is called Pulmonary Atresia with VSD (on the spectrum of Tetraology of Fallot). This basically means he has no pulmonary artery and there is a hole between his right and left ventricle. I've become an expert on the heart in the past couple of days and could go into much more detail, but that's the basis of his condition.
-the geneticist is sending off 3 different tests: 1) a  chromosome karaotype, 2) a more detailed testing of his chromosomes that would show any deletions, and 3) a test for a specific mutation called TBX-5. The genetic disorder the geneticist is suspecting is something called Holt-Oram, but again, only the results of the blood tests will tell us for sure. The first two tests are being read locally, but his blood for the 3rd test is being sent to Houston, TX. We should know the results of all these tests in the next 3-4 weeks.

We found out today that Ethan's surgery will be TOMORROW, March 11 at 8:30 in the morning. They expect it to last about 4 1/2 hours, as they have decided to do a complete repair. This means they will fix his heart so that it functions normally, it's just going to look a little different. He will need multiple surgeries to maintain tomorrow's surgery, but they don't anticipate another one for the next 3-4 years.

I know many of you would like even more details, and I really hope we can provide those for you at some point in the future. Right now, we just wanted to make sure everyone knows the basics of what's going on with our son.

Here are some of our immediate prayer requests:
-that Ethan remains stable through the night so that his surgery can go on as scheduled tomorrow.
-for the surgeons, and entire team of people, who will be operating on our little boy.
-that Jeramie and I will find time to rest tonight, as tomorrow is going to be a very long day.

We'll be sure to update after his surgery. I can already anticipate the thousands of prayers that will be lifted up tomorrow morning. Jeramie and I thank you in advance for that, and for all the prayers we've felt thus far.

We love you and appreciate you more than we can say.

21 comments:

Scott and Kristen said...

Thanks for updating - I know your time is precious right now! Scott & I are praying and will continue to do so. Sending love your way!

Lisa said...

We will continue to pray. We love you guys!

Janet said...

Y'all are lifted!

The Chappell Family said...

Joye, Jeramie, and Ethan...your precious family remains in our thoughts and prayers. We know this is not the easiest time right now...but know that you have MANY friends supporting you and that God is lifting you up along the way. We hope you feel God's peace along the journey...

Maemae said...

Our son had birth defects as well, and I know how traumatic it can be to have your new miracle taken from you - even for a moment - but Isaac is a testimony of healing that we will hold in our spirits for Ethan - We will be holding him in prayer - especially in the morning! We claim his life in the name of Jesus Christ

Amy said...

You're in my prayers. I will especially be thinking of you tomorrow.

Christi said...

Thank you so much for taking the time to update...we know so much is going on and we appreciate it so much! We continually pray for you all and think about all of you throughout the day. We will continue to keep you all in our prayers and know that God will hold you all in His arms. With Love, Christi and Nathan

Just Peg said...

May my prayers join all the others as they raise up and my you feel God's peace with you during this difficult time.

Lois said...

Joye, you and your family are in my prayers at this time. Lots of love goes along with it too!

Patricks said...

I am totally praying for you guys.

Anne said...

So many people at school ask about you everyday and say hello.
Ed Kelley wanted you to know your family is in his thoughts and prayers during this time. (One of his sons had birth defects as well.)
Thanks for the update... you are constantly in my thoughts and prayers! Love, Anne

Amanda said...

Praying for Ethan this morning. Lifting everyone up in my prayers. Hope you got some much needed rest last night. Celebrate with you all soon!

Baby Steps said...

Joye, we are praying for all of you this morning! Hugs, Marcia Hefner

Megs said...

I am praying for your family!

Littlefoot Estrada said...

Prayers to all of you! I can't wait to see pictures! I have heard so much about what he looks like!! Hugs and smiles!

GalaxyFC said...

Another prayer warrior lifting all of this up to God for Healing, strength, and encouragement. God will perform... God is present... God's will is happening... know God is with you!

3 Peas in a Pod said...

You are in our prayers and will be thinking about you!!

Aunt Jess said...

I haven't spent a second without thinking of y'all and my nephew, and any chance I can get give me 3 hours and I'll be there, but I'm amazed by all the support you have. (I don't know if amazed is the right term b/c you are both wonderful people and deserve every bit of it) I wish I could be there every second of every day. I can't wait to come up in a few more days and see how much my little trooper has progressed!! I would like to thank you two for being the most amazing parents/people/family, but also thank everyone on this page, and not (b/c of no email or knowledge to this page yet) for all your support, love, prayers, faith, and hope for my sister, brother in law, and amazing nephew. I love every one of you as if you were my blood. Thank you!

Heidi Bristol said...

just read this after I sent a message on facebook!! stay strong....i know you what you are going through...Today and the next week are going to be the longest and most stressful but you will make it! Greysen, I believe had the same surgery...he had a narrowing of the valve in his heart (which they cut out), a hole between the bottom of the two ventricles (which they patched up), and a hole at the top (which they said would close on its own)...His surgery was 5 months ago...and you would never know...be strong for your baby!! talk to him...rub him...I know they can sense you are there and it helps relieve the stress on them....if you need to talk or vent...feel free to call!! 828-443-2883

Donald Smith said...

Joye,

We are praying for your family here in Wilmington. If there is anything that we can do please let us know. God has picked you for this special time, and God never makes mistakes. He is going to use all of your love through this. May you realize that God has choosen you and because He has choosen you He is going to bless you and your family. Be strong and know that God has got your back!

"Since I know it is all for Christ's good, I am quite content with my weaknesses and with insults, hardships, persecutions, and calamities. For when I am weak, then I am strong." 2 Ch. 12:10

Praying for you,

Donald F Smith Jr.
(910)409-0865

Debbie B. said...

I work with Jeramie, and let me tell you the work family has you in our thoughts and prayers. May God bless you with his grace.

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