Heart Surgery and Decision Making

20091201_9846 blog

Ultrasound image of Apollo at 9 weeks 5 days.

Take a look at that…my sweet Apollo, nine weeks post-conception. Do you know, that by this time in gestation, Apollo’s heart had already take a wrong turn? It boggles my  mind to even think about it. His double aortic arch was already in the making here as the arteries that should have regressed and disappeared never did. Prenatally it wasn’t a problem…he didn’t need his trachea to breathe or his esophagus to swallow. But after he was born and as he grew, his heart slowly began to strangle him…

Our conversation with the cardiothoracic surgeon down at Children’s on Friday was very productive. He was thorough, concise and utterly unrushed. In fact, he told us he had “all the time in the world” to discuss it with us. We spent well over an hour going over Apollo’s current and pre-surgery anatomy and physiology.

I won’t go into the all the details here, they’re way too complicated anyway. Even the doctors aren’t 100% sure what is going on inside his chest. They know he had a double aortic arch, they know that the first surgery should have resolved his swallowing issues, and they know he no longer has a functioning left subclavian artery. They know it did function pre-surgery. They know he has a diverticulum still pushing on things.

They think he may have scar tissue (from the first surgery) now compressing his esophagus and trachea. The doctor yesterday said if he were to go in and re-operate he would be meticulous and remove every bit of scar tissue he could. He said he wouldn’t leave anything that might possibly cause issues in the future.

March 7, 2012

It’s a leap of faith to put such amount of trust in a doctor. To hand you child over to another person you have just met and trust their abilities with you child’s very life…and I can tell you it’s even harder the second time around.

We were told the first time the surgery wouldn’t “fix” him but it would “remove the problem”. Except it didn’t. And now we face heart surgery again, this time trying to make an informed decision about where to have it done and who will be helping.

How do we choose? How do we decided? Who’s the best person for the job? As the surgeon said Friday, there is no logical way to make the decision. And no truly “right” answer. I will say, Seattle Children’s Hospital has been wonderful in supporting us as we make our decision. We feel no pressure to have it done here and know we have the doctors/hospitals full support for Apollo’s follow-up care if we decide to go out-of-state.

Do we stay here? Go to Texas, or Boston or Philadelphia or Cincinnati?

Somewhere else?

We just don’t know.

 

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14 thoughts on “Heart Surgery and Decision Making”

  1. Thanks for the update Renee. I’ll be praying for you and Chuck as you’re making these decisions. Knowing you two will be praying about it too, I’m sure you’ll make the right decision. Love and hugs to you and your family.

  2. Before my husband and I started dating, I was complaining to him one day about trying to figure out where I should live, which college I should go to, where I should work, and how I was feeling utterly overwhelmed and lost. He didn’t say anything until I had talked myself out, then after a pause, said quietly and powerfully, “I think you should pray about it.” I really can’t express the gratitude and respect I felt for him, but it’s been 11 years, 9 of those married, and 4 kids since then. I can still hear his exact tone every time I’m faced with a difficult decision.

    You and your husband have a right to divine inspiration and guidance–to personal revelation regarding your family. Like you said, no matter how much logical and factual information you have, the only way to know what is BEST is praying together in a quiet moment, and allowing yourselves to listen and accept what promptings you receive. But I’m quite certain you know this already. 🙂

    Your family is wonderful, and I really love being able to see a part of it. Thanks so much for sharing, and for allowing us to travel this journey with you! My thoughts & prayers are with you, Apollo, and his doctors.

    1. I was going to say almost the exact same thing :)…When faced with “who to use this time we adopt”..” do we go local or nationwide”..”do we go attorney or nonprofit”…what are we open to as far as “filters”?”…all of these answers we got through prayer. Believe me. It was pressed heavy on my heart to keep using the same place for our adoptions even though 2 for 2 we had what was considered ” a very unusual(unpleasant) circumstance” One being a contested adoption after flying back and forth to another state several times while the birthmother changed her mind..and another time an adoption plan fell through as the birthfather abducted her at 9.5 mo pregnant.

      Oh yes….we went back… not once…but 2 more times!!!..lol. This is surely not “rational” or “logical” thinking in my mind. But we did pray constantly for guideance and this is what was laid on our hearts.

      Just a note about the scar tissue….unfortunately anytime you cut you are going to get scar tissue/adhesions….every time you remove them…they come back in some form…sometimes worse. I just didn’t want you to have a false sense that the scar tissue would be gone forever. I esp see this is bowel surgery patients. They come in over and over to have lysis of adhesions(scar tissue) that the previous surgery caused and now they are in more pain and problems than before..

      Continuing to pray for you. It is a difficult decision. I do believe there is a “better choice”…you may not like everything at every hospital 100%..but there will be things that ultimately will seem more important and jump out and help you make this difficult decision.

      1. bakersdozenandapolloxiv

        Thanks Liz. Of course, it goes without saying that prayer is being used in this situation. As far as scar tissue, my first question was, “won’t it just come back?” I have lost any real hope or ambition that he is going to be “fixed”. This is just another necessary surgery on a child who should have “only” needed one. One of the kids asked last night if this next surgery would mean he doesn’t need the feeding tube any more. Chuck and I both answered, “he may need it for the rest of his life. Anything shorter than that will be a pleasant surprise”. We have been told so may times the doctors have found his “problem” and “fixed” it. I can’t build myself up for that again. We are simply getting through this with a positive attitude. It could be so much worse. The surgery needs to be redone, so we’re doing it. He needed a g-tube, so he got one.

    2. bakersdozenandapolloxiv

      Yes, we have certainly prayed and about it and will continue to. Thank you for your encouraging words.

  3. I don’t know if this is helpful or not, but Meg from Sew Liberated had a baby not quite two years ago with HLHS, so not the same as Apollo, obviously, but a paediatric heart condition (he had to be operated on with a day or two of birth). Anyways, she was trying to decide between Duke and Children’s Hospital of Philadelphia. So perhaps speaking to her about her experiences might be helpful? I thought I’d just throw it out there, in case it could be a helpful connection.
    sewliberated.typepad.com/sew_liberated/2010/12/packing-the-knitting-bag.html

    1. bakersdozenandapolloxiv

      All info is helpful. At this point we are committed to having him evaluated at Texas Children’s Hospital but are not committed to surgery there.

  4. I’m sorry for all that Apollo has gone through and all that he continues to endure. I know that you will be guided as you make such a big decision.

    What art/sketch book do you recommend for elementary schoolers? I know you’ve mentioned several, but I couldn’t find the posts when I searched and I couldn’t access your old blog either. I’d appreciate your help. Thanks!

    Melissa 🙂

      1. Thanks for the link. I’m actually looking for a learn-to-sketch instructional book. I thought I remembered that your kids used and enjoyed a few books like that. Thanks!

        Melissa 🙂

  5. God WILL direct your path. At times like these I rest peaceably in allowing my husband to hear from God and make the call. And I pray and trust that God will lead him in the direction that He wants us to go. I pray that you will be able to do the same. And may the peace of God, which passeth all understanding, keep your hearts and minds through Christ Jesus (Phil 4:7).

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