Apollo’s Heart {September Update}

posted in: Apollo, Special Needs | 28

{The following photos were taken on my iPhone}

Apollo’s support team for yesterday’s marathon of appointments. Don’t mind their expressions, they were happy to be there. Just not so happy to have their picture taken.

Playing video games in the waiting room.

Chuck reading up on heart anatomy while we wait for the neck ultrasound.

We left the house about 9 am, stopped at the grocery store to grab some things for lunch, dropped Judah off at a friend’s then headed to Seattle. We arrived at the hospital about 11:20 and were scheduled to check in for Apollo’s ultrasound at 12:15. We showed Enoch and Tilly where the playroom was so they could take Apollo there after his ultrasound while we had a conference with his cardiologist.

We were called back about a half an hour late, not a big deal, except we had so many appointments back-to-back that we were running late for all of  them.

For those of you wondering, Apollo’s shirt says: I (heart) doctors, but the “heart” is an anatomical heart. I found this little treasure at Witty Bitty on Etsy. 

The neck ultrasound was ordered by Apollo’s cardiologist to determine exactly how the blood is flowing through his neck and head.

Apollo did great at his ultrasound. He held fairly still, and unlike this echocardiogram back in February, no tears were shed this time!

Apollo’s anatomy and physiology is so complicated, it’s really not something I can clearly describe here. What’s important is we did learn more about his post-surgery anatomy. To put it in the most simple terms possible, the artery the thoracic surgeons clipped to release his esophagus and trachea, is still “bulging” into his esophagus. That is what was visualized in Apollo’s Upper GI:

On top of this, the clip placed on Apollo’s artery (after the surgeons divided his double aortic arch) is not where the cardiologist would “expect” it to be. It seems as though his arch was divided in an odd place and the clip put in an odd place. Perhaps there was a good reason for this, but in his surgery notes there is no mention of why it was placed there and it leaves Apollo’s cardiologist to try to visualize what is going on through CT images. Both surgeons who worked on Apollo have moved on (Seattle Children’s is a teaching hospital after all) so there is no way to discuss it with them.

His cardiologist also suspects that he has a diverticulum, a bit of fiber, on the other side of the arch that is still compressing his trachea and esophagus.

We have, basically, three options:

1. A re-operation at Children’s (this would be setting a precedent- it’s never been done at Children’s before).

2. Find surgeon out-of-state who has re-operated on a double aortic arch division and have the surgery done by them.

3. Do nothing and see what happens over time.

The ultrasound technician gave Apollo some Toy Story figures when she was done. He was a wee bit excited.

The only option we are considering is option number two. Why not just leave it the way it is? Because while the g-tube is a wonderful way to feed him, it doesn’t solve the problem of chronic (and dangerous) choking. As Apollo’s pulmonologist said, the g-tube is a band-aid. It doesn’t address the issue. When Apollo chokes, it’s because food is caught in his esophagus not his trachea (or windpipe). When the food gets caught there, it pushes in to soft spots in his airway (tracheamalacia) and cuts off his air supply.

After the cardiologist, we saw Apollo’s pulmonologist. He is one of our favorite doctors at Children’s and the one doctor there who seems to view Apollo as  whole person, not just a sum of the parts that belong to his specialty. I was expecting good news- at Apollo’s last visit he was happy with how  his airway sounded and had heard improvement. This time, unfortunately, he was not happy. He said he heard a lot of noise still when Apollo breathes it and it is not what he expects to hear post-double aortic arch division. He kept mentioning the possibility of an underdeveloped airway. Not at all what we want to hear. He thinks Apollo needs another bronchoscopy done in the future, to determine exactly what he is hearing. He told us “Apollo’s broken every rule there is so far” in regard to his double aortic arch- including the fact that Seattle Children’s Hospital has never had a patient need a re-operation after a double aortic arch division.

He said Apollo needs a flu shot again this fall. He want us to keep him healthy to protect his damaged (and possibly underdeveloped) airway. It’s looks like he won’t be going to church with us anytime soon.

He most emphatically told us he  thinks we should seek a re-operation for Apollo in another state. “Don’t mess around with this. This kid’s had enough things that are screwy with his case already. Find someone who knows how to fix it and have it done sooner rather than later”.

And so here we are. Keeping Apollo home. Avoiding anyone who is sick. And trying to find an experienced doctor who has successfully re-operated on a double aortic arch division.

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28 Responses

  1. Kathy Barber

    I know they’re on the East Coast, but from personal experience; Deborah Heart and Lung Center in Browns Mills, NJ and Childrens Hospital of Philadelphia are both excellent with pediatric heart patients. Boston has a top center to…I “think” at Deaconess, but not sure. I’d at least try to consult with Deborah since they specialize in both heart and lung issues.

  2. Emily from NZ

    While this isn’t the best news, at least they are trying to fix it and not putting him in the ‘too hard’ pile, telling you ‘there’s nothing we can do’. Praying God will bring the right surgeons into your lives.

  3. Oh man. I figured he was going to need another surgery pretty soon based on his updates, but out-of-state sure complicates things for you guys and the other kids. So frustrating. 🙁 But absolutely, his life depends on it, so that’s what has to happen. I know you’ll find the best doctor at the perfect time for this to happen. Always thinking of you guys.

  4. I know Pennsylvania is pretty far away but the Hershey Medical Center seems to have a lot of experience with Aortic Arch. Even if you do not go there, the cardiologists might have some recommendation for a West Coast surgeon.

  5. You didn’t mention the results of the neck ultrasound; did they figure out how the blood is getting to his head & arm? Or do you not find out those results until later?

    • bakersdozenandapolloxiv

      We don’t have the results yet, but I will let you know when we do.

      • You know, you are really going above and beyond by keeping your random blog readers (to whom you owe nothing) so informed on this. Thank you for your generosity, and if it ever gets to feel like too much work, instead of a welcome relief, you should feel free to stop. 🙂 (Although you’re probably getting a lot out of it… not only do you get people like Brenda and Bernadette making helpful comments, but you inspire more people to keep praying!)

  6. LOVE Apollo’s t-shirt. Why, oh why, would Apollo do anything easy and simply? 😉

    Sending peace, Nena

  7. I’ve been following your blog about your son, what a cutie! I had a similar surgery for a right aortic arch with vascular ring many years ago and had a second surgery as an adult for the diverticulum as well as other issues. It’s definitely worth it. I don’t understand why the doctors can’t speak with the original surgeons, haven’t they heard of Skype? Good luck with everything, I’ll be watching to see what you decide. I would choose option 2 as well. You might look at the Mayo Clinic in Minn. I had my second surgery done there and they were amazing. Also heard good things about Texas children’s Hospital for this particular type of surgery. I wish you all the best.

  8. Dr. Carl Backer at Lurie Children’s in Chicago repaired my son’s double aortic arch and is known for such re-operations.

    • bakersdozenandapolloxiv

      Apollo’s cardiologist has already consulted with him on his case 🙂

  9. Sharon Hockenbury

    I am praying and trust that you will be guided exactly where you need to be.

    Much love to you and your family!

  10. Wow. Thanks for the update. I have been wondering what you learned. Not what you hoped, of course, but at least you are learning and determining options instead of just waiting,as you were told to do for so long. I am sorry Apollo needs another surgery. Will be praying for you that you find the best place and praying for all of the family as you go through this. No doubt that you made a good (if temporary) decision to go ahead and enroll your younger kids in school. Praying for you all.

    • bakersdozenandapolloxiv

      Yes, heart surgery in another state certainly wasn’t on our mind a month or two ago. I am glad that they are happily distracted while we wrestle with all of this.

  11. No helpful advice, but thanks for the update. If it’s important to know what happened in the first surgery, the doctors who did it can certainly be tracked down. The residency program keeps track of where people go after training, and just Google can probably help too. Your pulmonologist is a treasure, isn’t he? Prayers to guide you to a good surgeon and hospital.

    • bakersdozenandapolloxiv

      Robyn- One of the thoracic surgeons at Children’s has talked to them and “they are aware” of Apollo’s condition. We plan to meet with him as soon as we can get an appointment. It’s just OUR cardiologist hasn’t talked to them.

  12. Brenda Colvin

    You are totally headed in the right direction. Look into Boston’s Children’s Hospital, and Texas Children’s Hospital, and Children’s Hospital of Philadelphia which are your top 3 ranked in cardiothoracic surgery. However, Seattle Children’s is ranked 13 which is pretty darn good. You should do a search for a specific surgeon who has done the most of these types of surgeries and has the highest success rate and then go where ever that surgeon is. You have made such wise choices to date and I am sure that you will in the future.

    • bakersdozenandapolloxiv

      Brenda- Obviously I only write about the “highlights” when I blog, but what you just said was EXACTLY what Apollo’s cardiologist recommended, down to the same three hospitals. That makes me feel that much more confident with our course of action. In fact, with what you wrote, it sounds like you were in the room with us when we talked to the cardiologist!

  13. Bernadette Lock

    Hi Renee, was a bit hesitant to reply to this post but felt i “had” to. Firstly, you and Chuck are amazing parents!!! I know the two of you have had to do alot of soul searching this past year and have, i feel, always made decisions with your entire families best interest at heart. I really respect and admire the sacrifice you have made with sending your kidlets to school (of which alot of us share your pain, even though it is only “temporary”) and I know in my very fibre that this will be another hurdle to overcome but you guys will make it work!!
    The next thing i am going to say might affend some and i apologise if it does. I have tried to reword it many times and there is no way to not offend so hear goes. I have got a little guy that has a sensitive immune system and seems to catch every “bug” going (and takes longer to recover than the other guys) so i routinely remind everyone to wash hands as soon as they walk in the door during flu season. This is affective as we didnt have many illnesses this year. With the older guys now attending school they may be bringing home “bugs” that you might not necessarily be in contact with. So maybe if you arent already doing so, now would be a good time to train them to walk in the door put bags away then wash their hands. By flu season it would be second nature. Again, i am sorry if i offended anyone and i am by NO means a germaphobe lol

    Always in our thoughts and prayers xo

    • this is a super good idea

    • bakersdozenandapolloxiv

      Bernadette- that sounds like a great idea. It will be very easy to implement too, since I always feed them a snack when they get home. We can just add “wash hands” to hang up backpack, give me your papers, etc.

  14. Our son had open heart surgery at 7 months of age. His cardiothorastic surgeon was Dr Hillel Laks at UCLA. He only takes “weird” cases. When we asked our cardiologist who was the best surgeon in the world to fix our son, he didn’t flinch and said Dr Laks. Any way I know lots of people are making suggestions just wanted to add in my 2 cents. I pray for little Apollo often and wish you well.

  15. Oh, I second and third what Bernadette said! My first thought was the kiddos in public school bringing illnesses home. A local pedi here even advises her families to have all school age kids change clothes after school, especially if there is a young baby or a child who cannot get sick at home. Apollo counts as that!

  16. Have you considered Mayo Clinic in Rochester, MN? Their reputation speaks for itself. I am from the Rochester area, and my dad works there (not as a doctor, though :). Mayo Clinic takes care of all of my medical issues, and I have always found them professional, capable, and willing to listen. There is a Ronald McDonald house in the area, and many insurance companies cover Mayo. They are the best of the best. Just an idea. 🙂

  17. If I recall correctly, Chuck is Canadian? If that’s true you should looking into Toronto’s Hospital for Sick Children. They have specific experience with esophageal compression from a DAA http://www.ncbi.nlm.nih.gov/pubmed/17000782 It might be worth looking into at least. I’ll be praying that you find the best solution, whatever that may be.

  18. […] Here in an excerpt I wrote from his visit that day. The entire, detailed entry, is here. […]

  19. […] opinion and considers us experts on Apollo (not all doctors do). He has advocated for Apollo and he encouraged us to take Apollo out-of-state (sooner rather than later) to have his second double aortic arch division done. He has been […]

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