Quick Update on Owain’s Heart Cath with Decisions to be Made

It has been a long day. I didn’t sleep much, or well last night and not that my day is over I don’t have much energy left.

Everything went great. We ended up going in much later than scheduled, which made for a long morning for Owain. We were scheduled for 9:30 and it was just before noon by the time we left Owain in the Cath Lab. He was so funny after getting the versed, he got all giggly and was more than happy to be the center of attention. It made me feel so much better to see him giggling and making random comments to the cath team, but at the same time I felt guilty for what was going to happen after we left the room.

While we were waiting, we went down to Va Blood Services and I got some information on setting up a blood drive in his name. I wont be able to get to it until after his surgery, but getting the information is the place to start 🙂

His cath took just over 2 hours and he was already waking up and responsive when they brought him back into the room. He is such a strong little guy! Everything looks good for the next surgery. He has a few collaterals, which are veins that grow from his heart to his lungs to help get more blood to his lungs. He had them when he had his last cath procedure at 3 months, but they were much smaller, but have grown larger since then. Dr J doesn’t think that there is any reason to worry about it and at this point nothing needs to be done about them.

Owain was sent home with a 24 hour Holter monitor, which is an EKG that will wear until tomorrow. When the monitor is done with the EKG, it will turn off and then we send it back to UVa. I am kind of excited to know what his heart is doing at different times of the day when he is doing different things.

According to his cath and Dr J, his heart is doing great and that the combination of his defects is a good one. I am sure she described it much better than that this morning, but basically, he has a perfect combination of defects that works well for him. I probably have to rethink this and try to explain it better tomorrow, but Dr J loves the way his heart is put together. And that makes me happy.

The most difficult part of today is now knowing that his heart is both ready for surgery, and able to wait longer. I am not sure how I feel about that. Dr J told us that she doesn’t usually tell parents that they can either have surgery now, or not, but she told us that and now we don’t know what to do. Everything is scheduled, planned, prepared, coordinated and ready to go for June 24th. Dr J also told us that the only reason she mentioned this to us is that she is sure that we will make the right decision. I know she believes the best time for the Fontan is around 3 years and she gets the best results at that age.

Scheduling his surgery and then telling us that we can change it if we want is not as good of a feeling as I would think. I kind of wish that this decision wasn’t left up to us. How can I make a decision knowing that it might be the wrong one.

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7 Responses to Quick Update on Owain’s Heart Cath with Decisions to be Made

  1. Hazel Nut on May 23, 2011 at 4:05 pm

    Thanks Susan!

  2. Susan M. on May 22, 2011 at 10:46 pm

    I am praising the Lord with you that the results of the cath were favorable! Also, what a blessing that we live in a country with reliable and knowledgable medical care! I fully believe that the doctor would not have mentioned waiting on the surgery if she felt you, as his parents, would make a bad/wrong decision.

    In the book of James in the Bible, it says, “If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him.” The doctors have given you the facts, and the Lord will give you the wisdom.

    I pray that you will come to a decision with which you feel at peace and know that it is God’s will for Owain and for your family.

    Confident in Christ,
    Susan M.

  3. MOMmetime on May 20, 2011 at 9:56 pm

    Oh bless your heart! I agree wow it is an incredibly difficult position to be in…two years ago we were face with a really tough decision about my oldest daughter ~she had to have surgery on both of her eyes and the Doctor said it was best to do the surgery between age two and three but the problem was not discovered until after she turned 3 so the odds of it being successful was less than 50%. Oh, how I agonized over that decision…taking the risk and the odds I was leaning towards not even though all the professionals were telling me it was worth the risk…a month before the decision HAD to be made I became reacquainted with an old friend that was not only in pediatric medicine she has first-hand personal experience with the same type of eye condition and after that discussion I knew what I had to do! She went through the Surgery and did really well two years ago and her left eye responded much better but I am amazed at how the success from her surgery has changed her life for the better.

    I am wishing you lots of peace and comfort as you and your family take this journey.

  4. Hazel Nut on May 17, 2011 at 11:07 am

    Thanks Jamie, your opinion means a lot to me 🙂

    Everything you mentioned is right on the mark. Especially the possibility of having to have surgery in the winter. I wonder if he will really make it to next summer. Yes, he has been sleeping longer & is super cranky, but also he is 3 and on steroids, so it is hard to tell about the crankiness.

    Dr J likes to do the Fontan around 3 years because she gets the best results. I worry his collaterals will get too big in the next year and cause more trouble.

    I think really, she was telling us we could put it off because he is doing so well, but really it is best to do it now.

    The whole thing is making my head spin.

  5. Hazel Nut on May 17, 2011 at 10:40 am

    Thanks Amber! The anticipation is almost as hard as waiting through the surgery.

  6. Jamie on May 17, 2011 at 10:22 am

    These are the questions I would ask yourself (just my opinion for what it’s worth)
    1. Weird to me that she’s leaving it up to you – should you be asking more questions of why it’s your responsibility to make such a life changing decision? What is her reasoning?
    2. Is this affecting his quality of life? (Kaston was sleeping 18 hrs a day & VERY cranky before his Fontan at 22 mos.)
    3. What if you start seeing adverse changes in the winter…you don’t wanna deal with the Fontan during germy winter months. Summer is the best time.
    4. Can you handle more anticipation – to me, that’s the hardest part of it all…waiting & rescheduling, waiting & rescheduling is VERY hard on mom & dad
    5. IF you wait and he makes it for another year…will he be able to remember it at that age…will it affect his personality more because of the memory of it?
    6. If you wait another year or until he starts showing signs of distress, how will it affect your other children?
    7. Are there any possible negatives, health wise, of doing it now? Or if he starts showing signs of C.H.F., what are the negatives?

    To me, I would just ask more questions. I know it’s hard to think of those things when your all of the sudden in that situation, but evaluate what you want for your family and make an educated decision.

    So glad his cath went well, though it made for a long day! Prayers for guidance and peace in your decision.

  7. Amber on May 17, 2011 at 2:22 am

    I am happy to hear all is well and that his heart looks good and is ready. So I’m sure anytime is the right time since the surgery is so necessary. Even if you waited, you would still anticipate the decision, and the when. Not easy at all. But you have great doctors and a strong Owain! I look forward to hearing from you as you go through this again with little Owain. He will do great. HUGS.

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