When we first learned that Owen would need a transplant, we immedietly thought, let's do this as close to home as possible. We have since learned that Owen is a high risk case, the chances of him getting a perfect heart are slim, and we may have to try some risky things to work around his antibody issue. His antibody issue changes things.
I have narrowed our options down to Stanford, Seattle, Pittsburg or Boston. I feel extremely confident in these centers at this point. Not only will they list Owen for that perfect heart (a negative crossmatch), but they will pre-treat his antibodies in the meantime, and if time is running out they will take a heart with great function (even if it's a positive crossmatch) and use agreesive treatments to help him fight rejection. All four centers have had good outcomes, worked on many high risk antibody cases, and showed genuine concern for Owen.
We have not ruled out UCLA (our exisitng heart center). My confidence in them has been shaken and we are still planning a trip to visit with them. I have a lot of questions for their entire team and through talking with all the other transplant facilities.. I have developed SO many more concerns.
I have requested Owen's record be sent to all four of the hospitals above. They will review Owen's situation, talk about it with the entire team of Dr.'s and get back to us. So now we wait.
Hey... did you know that April is National Donate Life Month?? I didn't either. If you're not registered to be a donor... click on the picture and register.
I hate to think that in order for Mr. Owen to have a chance at life... he will need a heart. A heart that comes from a child under 44lbs. A child whose life will have to end way too early.
11 comments:
The reality of transplant is devestating. We just need to leave things in the lords hands and he will direct you. We will be your cheering section!!
I'm glad you are feeling better about Owen's options. It will all work out!
Many Blessings,
Amanda
So good of you to check out every possible option...I think I'd do the same.
In the past I always felt like donating organs wasn't something I wanted to do. Now you better believe my name is on that list! Good to spread awareness!
Praying for your family.
SW WI MOMMY
I just stumbled upon your blog and am very touched by your family's story. Have you looked into Loma Linda University Medical Center? It is here in Southern California and is a world leader in infant heart transplantation. Maybe you should check them out if you haven't done so already. My thoughts and prayers are with you and your family.
I stumbled across Owen's button on a friends blog, and I just read about your precious son - Even though I've never met you, your story touches me!
I pray that the outcome best suited for sweet Owen will take place. May the Lord bless you and your family with comfort & guidance. You are truly a remarkable family!
So happy that you got things straightened out and have talked with everyone..I know that eases your mind alittle and makes you feel better.
Praying for Owen each and every night.
Praying for Owen every single day! I know the centers you listed are top notch and you will find the best care possible. I also would like to recommend Dr. Pirooz Eghtesady at Cincinnati Children's Medical Center. He not ONLY specializes in Hypoplastic Left Heart but he ran the research facility for years and now heads up the TRANSPLANT division... If you haven't looked there yet I would at least give a call. Dr. Eghtesady has done TWO open heart surgeries for our daughter and we could not be happier! I have his direct email and would be happy to send it to you if you would like to contact him.
Hugs and prayers!
Amber Schmidt
http://family.kentuckystudio.com
You are amazing. How lucky is Owen to have such a thorough champion of a mom. I'm sure he chose you for just that reason.
Our thoughts and admiration are with you.
Mindi and McKay
i am a donor~i am on the list.
I hope and pray things will work out. You are very amazing and strong!
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