I was at my Mom Connection group today and we were asked to pray that God would give us the strength to resist becoming anxious about our children and the discipline to not demand everything about our child's life be "our way." I felt like I had to practically stand up and shout "I am really, REALLY anxious about my child's life right now. Really." I know that Drew's life is in God's hands and that whatever happens will happen according to God's purpose for our lives. But what I want about Drew's life to be "my way" is just for him to be ok. And I am feeling incredibly overwhelmed with making this most recent decision.
Some news: when I called our cardiologist to tell him what Dr. Azakie said about the possibility of a complete repair he wasn't as excited as me. He said that we'd already talked to two great surgeons who didn't think that was the best option. He reiterated that when we asked him what he would do he said he would go to Stanford and that hasn't changed. He said we needed to trust the person doing the surgery and that he trusted Dr. Raff and he trusted Dr. Hanley. And that's all he said. From what it sounds like, he might as well have said "and I don't trust Dr. Azakie." The hard part is, I don't know why. And I have a feeling he can't tell me why. He said we need to be comfortable wherever we go, and the truth is that there is nothing comfortable about this. I am definitely uncomfortable.
Dan and I talked it over and while I am leaning toward Stanford, he is leaning toward UCSF. His reasoning is that he thinks there must be a benefit to having the same surgeon who has already seen and touched Drew's heart do the next surgery. He thinks that maybe the reason the other surgeons wouldn't have done a Norwood and a Glenn is that maybe Dr. Azakie was hoping to get to this place (of a possible repair) the whole time. And we are both lured by the possibility of Drew having a (relatively) normal heart and no more heart surgeries.
But this is where my fear really comes in. The other surgeons said that a repair is a much more complicated (and therefore risky) surgery. Are we will to take a greater risk to have a better long-term outcome? All I really want is for my son to come home with me after surgery. If we try to do something great and we end up losing him I won't be able to live with that. And so that is where we are right now. Anxious. About our child.
Our prayer verse for today's mom connection was very appropriate and is what I will be praying in the coming days:
Trust in the Lord with all your heart and lean not on your own understanding: in all your ways acknowledge him, and he will make your paths straight.
Proverbs 3:5-6
Drew
Drew is a happy 7-year-old who loves his family, his friends, and everything Star Wars! He was born with a CHD, specifically interrupted aortic arch, VSD, hypoplastic aortic root and DiGeorge Syndrome. He has had three open-heart surgeries, the most recent was in May 2008 at Stanford. He is so strong and brave and we are very proud of him.
Ava
Ava is a spirited 5-year-old girl. She loves her family, friends and climbing, jumping and dancing. She brings us a lot of joy and a lot of drama! She is heart healthy. We love to see all the adventures she has!
This is how Drew's heart is now!
One and a half ventricle repair 1) VSD closed with a patch 2) Conduit from right ventricle to pulmonary artery . Drew still has the SVC connected to the PA in the upper left. Thank you Dr. Hanley and Dr. Mainwaring!
13 comments:
Great verse Andrea. Easy to read, easy to understand, hard to practice. A good reminder for me as we face all this fertility crap. It's hard to let go of our dreams and just trust God. Sigh... but He loves us SOOOOO much so it does make it a little teeny weeny bit easier. Love ya!
Amy
Oh Andrea...
I wish I could look into my crystal ball and give you advice on which surgeon to use. You and your husband BOTH have valid points. We're at a point with Isaac where we could let a surgeon here in Vegas do his conduit changes...but, because Dr. Hanley knows his heart...I'll always make the Trek to Stanford. So....I'm as torn as you are...When do you have to decide by?? When will he be ready for this next surgery??
I'll keep checking on you...I wish I had some wisdom to share...but, like you....we just have to pray and know that we'll make the right choices when we need to.
Kathy
My Dear Andrea,
I wanted to let you know that Alexia has had 5 OH surgeries in 22years. She has never had the same surgeon twice. She has had amazing and well known surgeons, Leonard Bailey, Hillel Laks and Rick Mainwaring and two that were not so well heard of. They all did tremendously good jobs and Dr. Mainwaring the best, being the 5th surgeon to look at her heart and know it like the back of his hand and make it seem so easy. Really it doesn't matter if the surgeon has been there before, the heart is always new when they look at again.
All we can do is keep on praying for you guys. I wish I had helpful advice, but all I can do is keep praying for God to make it clear somehow. We sure love you all!
:) Faye and the Quayle Family
As anxious and worried as I am right now about a simple tonsillectomy, I can't possibly imagine what you are feeling at all...
I just pray that whatever decision you make you will have peace with it. You're in my thoughts, as always!
Andrea
No words of wisdom here - all I can offer is my support and want you to know that I am thinking about you and hoping that some clarity will come to you soon.
Dina
This decision just shouldn't have to made by us as parents...it's too hard! I do remember Dr. Mainwaring mentioning that it doesn't matter if the same surgeon does a surgery twice. That they don't leave their "mark" to make it easier to get around the next time. But OUR comfort level comes into play when having the same surgeon so I can identify with Dan on that one. I'll be praying for peace and clarity for all of you on this decision.
I think Valerie gave you some great advise.
I want to share this verse with you:
Do not fret or have any anxiety about anything, but in every circumstance and in everything, by prayer and petition, with thanksgiving, continue to make your wants known to God.
Philipppians 4:6 (Amplified Version)
Andrea - You have made your wants known to God. Now you have to cast your cares upon him and believe that he will use whatever surgeon you choose to perform the miracle in Drew's heart. I personally believe these surgeons are vessels that God uses to touch the hearts of our children. When you decide who will do the surgery begin confessing wisdom over him, that he will choose the right operation for Drew. I pray that he will not require more surgeries but I also now that God knows the future and he want to do whats best for Drew. I know this is not an easy thing to do, I'm just speaking from my heart to yours. You are an amazing woman and very intelligent woman so I know you will make the right decision.
God Bless
Andrea, I don't know I would do in your place. I didn't know what to do when we were expecting Wren either but it is a lot easier for me to contemplate these things when it is not with me all day.
What I know is that Dr Hanley is a superb surgeon. He is widely recommended and performs surgeries others cannot.
Why doesn't he recommend a full repair if such a thing is possible?
If Dr A had considered a full repair early on, why didn't he tell you it was a slim chance?
Why didn't Dr A perform the single stage repair Dr H would have in the beginning?
My understanding of the surgery process is that surgeons make the final evaluation of whether they can do the surgery when they are in the OR. So, its important to have the person with the best record and widest skills in the possible procedures not the person who offers the best theoretical possibility.
Hi Andrea,
Just wanted to let you know we are thinking about you guys and praying for the decision you will have to make. We wish you the very best, it is so hard to make these types of decisions for our children. Take Care.
Rebecca
Don't feel like I have any words of wisdom here. Only that I love you and your family. Thank you for continuing to update your blog. I feel like I understand your process a little more each time. The decision that lies ahead is incredbily tough. I will be praying for all of you! Love, Mel
Hello,
I was looking at random blogs with the "next blog" button and yours sparked my interest because I was born with a CHD and have had 8 Heart surgeries including the fontan, so I know what your going through. If you ever need to talk or aske questions feel free to do so on my blog and I will give you my e-mail. Thanks Holly
Our prayers are with you and your family to be guided in your decision and have peace to know that it is correct. I don't understand all of what you are going through or deciding, but here is some food for thought from my experience. Our childs consitions are very different. I talked to a PCICU nurse at UCSF who was a previous PCICU nurse at Stanford. I asked her what she felt about both hospitals, surgeons, procedures, etc. She said, along with my very upfront anesthesiologist that Dr. Azakie was probably the top surgeon in the world for the Norwood (this anesthesiologist didn't sugarcoat anything about the procedure and did say others might disagree with his opinion about Tony and the norwood). Maybe that is why Dr. Azakie chose to do the Norwood and others wouldn't have done it. The nurse said that Stanford has a trademark on a Tetraology of Fallot procedure, are very specialized and experienced in that repair. She said in her opinion, both are great surgeons and have great teams, but do specialize in different things. I asked her why she is at UC and she said the team is more family friendly in her opinion, which is nice, but doesn't say anything about the surgeons. She said they are both very capable. I do think that surgeons can't completely understand the heart until they feel and work on it. Our cardiologist said that we would have 'interesting' converstations about whether our son with disproportionate AV canal/hypoplastic left heart would be able to have a complete repair. Dr. Azakie told us he would always do a full repair if he thought it was possible, but would never take the risk if he didn't think it was possible. He said it wasn't possible, went with the Norwood procedure, and we await our Fontan in a couple of years. Either way, I know you are in good hands. Our prayers that you come to a decision of peace.
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