I got a call from our NP at Stanford this evening....
They were able to present Owen's case to the surgeons this afternoon. That was fast! Dr Hanley and Dr Reddy both agreed that they would like to see an MRI of Owen's heart and specifically his Tricuspid Valve Regurgitation. They are concerned that going forward with the Fontan, with the valve how it is, would put too much workload on his right ventricle.
They would prefer to do an open heart surgery, on bypass, to try to repair some of the Tricuspid Valve Regurge and see if that will increase the function of Owen's heart before going forward with a Fontan.
Yes. That makes two open heart surgeries in the next six to eight months.
Carson and I have requested to meet with both Dr Reddy and Dr Hanley in person to speak with them regarding their plans, the risks vs the benefits and get a feel for which Surgeon we feel more comfortable working on Owen. We also have MANY questions!!
An obvious question is ... how risky is it to put Owen under two major open heart surgeries that close together? If that Tricuspid Valve surgery doesn't produce great results, are we back at square one for transplant? On the flip side... if the Tricuspid valve surgery does produce desired results, is Owen then a definite GO for the Fontan?? If not, is it worth putting him through the surgery to work on the valve in the first place?
We have a lot of questions and we know we'll get our answers in time. The next step is to call scheduling for the Surgical team and see what their schedules are like. Then I will contact Dr Rosenthal and have him schedule the MRI for the same week as the Surgeon "interviews".
If anyone has any advice or has had the pleasure of working with Dr Hanley or Dr Reddy... please give me any and all advice!!!! We need all we can get right now.
The Nurse Practitioner also brought up a valid point... if we schedule the MRI and Surgical consult soon... they are most likely going to want to plan the surgery soon. Owen is currently "stable", so we could technically push things off until after the Holidays. But then again.. what if something happens before then and we don't have a game plan?
Is it better to put Owen through a surgery when he IS stable, rather than waiting for him to become sicker when he would really need it?
Another huge issue is that Dr Pearl (Owen's Cardio Surgeon that did the Norwood and Glenn) had attempted to repair the Tricuspid Valve during the Glenn operation and the outcome was almost him not making it out of the Operating Room. I will never get that day out of my head.
My head is obviously spinning with questions. For the past two years we have mentally planned for Transplant. That was our only option. Now we are faced with two very risky surgeries and transplant may still be inevitable.
I know that things will work out. They always do. That doesn't change the fact that I am scared speechless.
Wednesday, September 15, 2010
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15 comments:
Wow, I can only imagine your list of questions growing over the next several days. I've heard positive things about Dr. Hanley, but I don't have any personal knowledge. I hope you get your answers and come to a decision that puts your mind at ease. Thinking of you and your family as you navigate this next step in Owen's journey.
Whew my head is spinning for you! Of course I loved Dr Hanley. He is quiet and was very fatherly-ish to me. What I needed to hear most was his positivity about being able to do the repair, especially after so many surgeons said they could 'try'. And of course we had great outcomes with Braden's full repair and then 6 months later a valve repair. OR to home was less than 4 days with the valve repair. We did meet Dr Reddy but it was always Hanley who we wanted tongandle the case. But I have read amazing things about both of them. You'll know when you meet them both which one is for you! Hugs!!
Thank heaven for LPCH!!
This is a lot to take in, but remember, this is your prayer answered. I remember about a year ago, when you were going to Stanford the first time you were holding out hope that they would be able to do the Fontan. Now they think they can. God has a much bigger plan for Mr. Owen...have faith in that. You guys have come so far! I can't wait to see the pictures of him running around, all pink, without hoses in about a year! Wow! Good luck talking to the surgeons, I hope they make you feel confident and are able to answer all of your questions :)
Heart Hugs!
Jen
Andrea,
As you know we don't go to LPCH, we go a few miles up the freeway to UCSF...but with that said, I know both of these men have amazing reputations in the local heart community. Especially Dr. Hanley. He actually taught our surgeon, Dr. Azakie.
Anyway, Hanley's reputation is unparalleled. He is supposedly the cream of the crop...although, I can't imagine anyone having more skill than our Dr. Azakie:), but I'm partial!
If for some reason we couldn't see Dr. Azakie any longer, I'd go to Hanley in an instant (based off the experiences of families in our little heart community).
wow, so much to think and pray about, andrea...
we have had personal experience with dr. hanley, and have found him to be one of the warmest, kindest doctors we've ever met. he also took on moriah's heart after being told there was no hope for it. the man is pretty incredible to say the least.
i will be praying for you guys as you continue on this journey.
much love,
victoria
My daughter has undergone 2 open-heart surgeries with Dr. Hanley in the past 6 years. He is incredible! He put our minds at ease when we asked him about the details of her most recent surgery, to the point that my husband said he wished we would have talked with Dr. Hanley 6 months prior, instead of worrying so much. He takes the time to answer all of our questions, and is so calm. In addition to his amazing surgical ability, Dr. Hanley will pose for pictures with my child, which is a treat for this scrapbooking Mom. He also flies to our state to have a reunion with his patients almost every year. It is amazing that he will do that just to connect with his patients, when he could probably be making tons of money speaking at an international conference instead.
I have watched Dr. Reddy interact with his patients/families in the ICU, and he seems amazing as well. Both surgeons are so good at their work, both are so caring and committed. Your child will be in good hands--the best!
Another point to add is that the cardiac ICU at Lucille Packard is tremendous in helping achieve the best recovery outcomes. I think that can be overlooked sometimes, but they really deserve credit. That is a solid unit that really does their best to help the patients heal after surgery...including the parents in every step of the process.
It is great that you are seeking to get your questions answered, so you can make the best decision for your child. Good for you. Best wishes for a miraculous outcome.
I am sorry that you have so much on your plate right now. Yes, it for sure is a lot to think about and there is so much to weigh....now or later. Never easy.
In my opinion it is always better to do surgery when they are healthy and stable rather than to wait until they are very sick. However you are Owen's mom and it is your decision on what is best for him.
I'll be praying for everything to come together and for you to come to a decision on what to do.
I am always praying for Owen and your family, I will ask God to lead you in the direction He feels is best...
I don't have any experience with Dr. Hanley-yet. I'm headed to LPCH October 7th for my first trip. My little one, Asher, is haveing a complete unifocalization done by Dr. Hanley. Since you've been to LPCH before, do you have any advice for me? I'm coming from Utah. IHH referred me to your blog. On a side note, I personally feel it is better to do these surgeries when our little guys are healthy and at their strongest, rather than waiting for the obvious need, or missing the opportunity all together.
Wow! That's a lot to think about! Praying for Owen and family as you make this BIG decision! Trusting that God will lead you in the right direction!
Holy moly... that is a lot to consider. I will be in prayer that you can get answers at the timeline you are meant to have them and that whatever you choose you have peace. Owen is God's before he is yours, and He already knows what will come of all of this.
I wish I had opinions to tell you, but you are so much like me I think no matter what anyone tells you, you need to feel good about whats happening. Thats how us overly involved moms are.... lol
xoxo
Praying for Owen and your family as you work through the decision making. I know first hand it is all very hard to take in and process! I just felt the need to chime in about the tricuspid regurge. Joshua experienced the same thing. His backflow pressures were higher than the pressures going the right direction. All of the doctors that I spoke to told me that the outcomes of tricuspid valve repair (on small kiddo's) is not very good. Transplant is tough. Joshua has had more than his share of complications and scares but he continues to thrive! He and Owen seem to be close in development. :-) If you ever have any questions feel free to email me. (I will get you my # too if you'd like it.) Take care. And Andrea, your doing an awesome job.
Leah (Joshua Garrison's mom)
Leahgarfield@gmail.com
Wow...I sure wish I had some advice, but not a bit! Many, many prayers as you face these difficult decisions. Hopefully after you "interview" the docs the right decision will be obvious for you. Lots of prayers!
I have not been in blogger land for a few weeks and off FB for almost the same. I had to come see what was happening with Owen, knowing you had gone to Stanford. Oh, Andrea, I can not even begin to imagine what it is that you are going through. I just wanted you to know that I think about you and pray for you and your family every single day. I obviously can't help with the Dr stuff, but I can recommend getting all of the information that you can. Praying about it. Weigh the pros & cons and start moving in one direction. I know that if that course of action is not the correct one, you will know immediately. And if it is, you will also know that immediately. Keep the faith. Stay strong and know that many are praying for you (as evident by the comments that I always see)!!!!
Everything from here up to the present I've read and am so happy fpr all the good news!! I KNOW all the surgeons at Stanford are amazing and the best!!!! If you pray all you can and leave the rest up to HIM you and the surgeons will know what's best for your one and only Owen!!!
Lots of LOVE!!
Mason's Mommy :)
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