Owen was discharged just in time to head downstairs for cardiology clinic. He is requiring a little less oxygen than pre-cath, but is still on 1/2 to a liter of O2.
Dr. Rosenthal was once again thrilled with Owen's cath results. As I mentioned yesterday, Owen's pressures are amazing and they have remained great for over a year now. His heart function and leaky valve have remained the same during that time, which is why we keep hearing the word "stable" to describe his condition.
Dr Rosenthal still believes he is doing too well to list him for transplant and his overall opinion is to buy as much time as we can with Owen, and treating transplant as a very last option.
With that said, he feels that Owen may be a good candidate for the Fontan afterall.
Background: We were told in Oct 2008 that Owen was NOT a candidate for the Fontan due to his high lung pressures, severely leaky valve and heart function. With a lot of medication therapy and oxygen, his pressures have significantly dropped and maintained themselves over a year now. This bringing on discussion of the Fontan again.
Doing the Fontan would come with it's own set of risks and we could have three possible outcomes.
1. A successful Fontan could buy us more time with Owen, three to fifteen more years, before having to go forward with transplant.
2. He could have the Fontan and things might not go well long term, requiring a heart transplant soon thereafter.
3. The Fontan could go terribly wrong and his little body won't be able to handle the new lung pressuresand he would no longer be a candidate for a transplant. Obviously, this would be a worst case scenario, but it is a very real risk.
Owen is most likely outgrowing his Glenn anatomy and that is resulting in his low dips in oxygen saturations. He is in the weight bracket at 30lbs for the Fontan and so we wouldn't have much time before making this HUGE decision. Dr R. said it would most likely need to happen in the next 6-8 months.
Heart Transplant is another decision that comes with huge risks and there is no guarantee that his little body will accept his new heart. That, along with his highly sensitized antibodies, could cause long term rejection complications.
We have some serious decisions to make over the next few months. Dr. Rosenthal is going to present Owen to the board of cardiothorasic surgeons at Stanford next week. Dr. Hanley and Dr. Reddy are miracle workers and we can't wait to hear their opinions. If they feel that Owen is a good candidate to go forward with the Fontan, we will fly back to Stanford to meet with them face to face. We need to weigh the risk and benefits of putting Owen through another surgery.
Another huge obstacle is Owen's leaky tricuspid valve. In order to work on this valve, if the risk isn't too high, they would need to put Owen on bypass to try to fix it. They would not do this at the time of the Fontan because the risk would be entirely too high. Instead, it would require yet another open heart surgery with no guarantee of a good outcome.
We left our appointment today with many options and a little guy that is doing better than when we brought him here a couple days ago. We are glad his pressures continue to remain perfect and that we are blessed with options, beyond transplant. We will not make decisions without a lot of research, risk assessment and praying that we do what is best for Owen.
We continue on a rollercoaster ride and I'm sure it's not going to slow down anytime soon.
Friday, September 10, 2010
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26 comments:
I am a long time stalker of your blog. My friend's now 7 year old has had two surgeries at Stanford under the direction of Dr. Hanley, so I know of his miracle-working nature. Her last surgery was in May to replace a valve, and it turned out great. She is now back to her normal self, putting on weight, and able to do all of the things she used to do. She isn't an HLHS child though - instead a ToF patient. I will be praying for wisdom for you in the next few weeks.
Those are going to be some tough decisions!! It seems you would want him to just lean more one way or the other! Good luck!
The first words out of my mouth after finishing your post: "Wow." I cannot imagine being in your shoes right now. You're in good hands at Stanford (which you already know.) I'll be thinking of you guys over the next several months as you educate yourself, gain insight, etc. Have a safe trip home with your little man. Heart hugs.
Praying as you weigh the options of both. I know it must be such a blessing that he's able to have the Fontan but there's so many risks with it, too.
Praying as always for Owen's best!!!
I'm so happy for you guys ...that you not only have options but that he's doing so well right now.
I know that you have a tough road ahead..many decisions that are beyond crazily hard.. too hard even for me, an HRHS mom, to comprehend. But us Bents are rooting for you all.
Wow! Making such tough decisions is very difficult but what would we do without these brillant doctors who work so hard for our children? Owen is in good hands! Wouldn't it be amazing if Owen had a successful Fontan afterall? I do have one question... If you do the Fontan and it buys you say five years or more, will his high antibody count go down or do those things usually remain the same? Good luck with everything!!!
Wow. Wow. Wow. I would be feeling the stress of that decision for sure!! We know how things can change from week to week in types of options available and I hope and pray that you will be guided to the very best option for Owen!
I am nearly in tears! That is so amazing that suddenly you have more options!
And I don't have to tell you how much I owe Hanley and Reddy. They are Angels sent straight from Heaven in my opinion.
As long as you can look past the fact that they wear suit coats with scrubs, they are pretty much perfect! {wink}
Can't wait to hear what the Stanford crew says... They said yes to us when everyone else said impossible.
BIG HUGE HUGS!
Oh wow. That's a lot of figure out, but how great to have options. Good luck figuring out what's right for Owen. mommy knows best and I'm sure you'll make the best decision.
Decisions, decisions! You have some tough choices to make, but as you pointed out, what a blessing to have options!
I'm sure when you reach your decision, after research, thought & prayer you will feel at peace.
Really glad to learn that he's doing as well as he is right now:)
Love you guys!
Praying for Wisdom..
Praying for Peace...
with Hope,
~ Chris A ~
I have not a doubt in my mind that you will come to the right decision with the guidance of some great Doctors at STanford. I always like to ask the Doctor what he would do if it was his child, to get a true feeling for what is best from a medical standpoint, but Andrea you know your little boy best and Mother's intuition will guide you to the best and most conservative approach to his care.
My Prayers are with you on this new journey.
xxoo
Yikes! That must have come as a surprise! What great news that the Fontan might be a possibility now. It's always great to have options... but not so great to have to make those big decisions! I really hope you get good guidance from Owen's doctors, so you don't feel like you're having to work this out on your own. Owen is doing so well - I'm sure they'll point you in the right direction for him. I really hope that the Fontan will be a safe possibility for him - it has totally revolutionised Charlie's life - and then you can keep the transplant on hold... hopefully for MANY years!! Thinking of you all and praying that you get clear answers to all your questions. Lots of love xxx
WOW! Not what you expected at all, huh? Praying for you guys while you come to a decision. What a tough one!! So glad that he is doing so well that the Fontan is back on the table
It is so great to have options. It has seemed in the past that you had very few of them. Owen is indeed one amazing little guy. I have prayed faithfully for you on this journey. I follow you closely but rarely comment. I ask you to prayerfully go to the Lord and ask His wisdome. He wants very much to show you the best choice for Owen. I will continue to pray and lift you up. You are a family walking a story of faith and God is using Owen in a mighty way. May you feel the peace that passes all understanding from the God who loves us all unconditionally. Jennifer of Southeast, NC
Could you please do a post on how you packed and prepared for plane travel with a Gtube fed child?
What did security say about the prefilled syringes of blended foods?
I would like to know about how you fed him during the flight, did you just give cold syringes of food from the ice chest? were you able to warm it up somehow?
how did you prepare blended diet once you arrived? did you keep going to grocery store for fresh items? or use a fridge? Please help with tips!! We are facing a similar trip soon with our Gtube child..and could use any tips! Thanks very much!!!!
Wow Andrea! This is really amazing...I'm sure you're thrilled to have more options but also that much more confused now on what's best for Mr. Owen. Thanks for giving us the info so clearly, it was easy to follow the pros/cons.
Keeping you in our prayers! The Lord knows best and in His time, I'm sure this will all be revealed to you. Heart hugs!
Praying! I never read your blog and leave without chills. I can't imagine the decisions you have to make but Owen is blessed to have you and Carson in his corner!
Praying for all of you!
Oh wow lots to take in!! Glad he is doing so great though right?? I am sorry you guys are faced with this and what to do!! Praying you will do what is best for you and your little Owen!! You guys have been awesome the whole time! Hmmm so would they fix the MTR before the fontan? Thats how Kylie is but hers goes from mild/moderate/mild it's crazy the things these little ones are doing. LOL Thats what our card told us about Kylie too, she is outgrowing her "glen" it does grow with them but makes it harder to work!!! Well glad things are saying he is a SUPER STAR!! We all knew that anyways!!! Get home safe!!!
Oh my goodness! I am so happy that you continue to have options! It would be so amazing if they could do a successful Fontan and then Owen could get a transplant AFTER they become proficient at the now new technology of using a pig heart shell, inserting transplant recipient's heart cells, growing a new heart and then having NO REJECTION. Your little trooper continues to amaze everyone! Keep up the good work! :)
Jen
Hi! Its Michele, I met you guys yesterday on 3W (Nurse). Owen was so sweet, and I was thrilled to meet him. And the fact that he "flirted" with me was so cute:) He really is just so sweet:) Anyways, I wanted to say that it was wonderful to meet such a great family. I know you guys have a lot to think about, and please know that you are in my prayers.
Wow! It sounds like your trip has been productive but also given you all a lot to think about. We'll be praying for you and the doctors to make the best decisions for Owen!
I think it is so amazing to have these options when at one point there wasn't hope for anything other than transplant. What a miracle. We will pray that they will know the right course for Owen.
I'm praying that you get some clear guidance. I can't imagine having to make such hard decisions. I know you'll do what's best for Owen, you always have. He is still just the cutest thing ever.
I wonder if you have ever heard of or communicated with Paul Cardall. He had a fontan as a child and then was transplanted as an adult. Here's his blog. He is the nicest person you will ever meet. I'm sure he would talk to you and answer any questions from his perspective that you might have. I wish you peace and guidance during this stressful time.
http://www.mytricuspidatresia.blogspot.com/
This is good Cath news!!! Doesn't surprise me about what Dr R said about putting transplant off though :) Prayer will become your best friend to make the best decision for little "O"!!! And I do agree that ALL the surgeons at Stanford are BRILLIANT!!! They can work Miracles! I know first hand!!! Glad O is doing better! Lots of love, hugs and prayers being sent your way!!
Love, Mason's Mommy
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