Apollo’s Heart {Update 8/12}

posted in: Apollo, Special Needs | 41

Killing time at the Starbucks on the fifth floor of Seattle Children’s Hospital. Don’t let the juice box fool you- he didn’t actually drink any of it.

Yesterday Chuck, Apollo and I all headed down to Seattle to get more information on just exactly what is wrong with Apollo’s heart. When they found the artery compressing his esophagus back in April, the push was just to get the g-tube in so the poor kid could eat. Apollo’s cardiologist away while he was admitted, so this is the first time we’ve had a chance to talk to him. In the intervening time I’ve been in contact with his cardiologist both on the phone and through email and he’s sent Apollo’s records to a doctor in Chicago for a second opinion. Yesterday was the meeting to finally talk face to face.

We knew something was up when the nurse said she needed to take his blood pressure on all four of his extremities.

Okay, this is so involved and complicated, it took the cardiologist literally 20 minutes of drawing sketches of hearts to describe this….I’ll just tell you what I know and may need to edit it later as we learn and understand more.

He started by saying the diagnosis of a double aortic arch was never in question. That was perfectly clear in the MRI, it was clear in the ECHO and it was clear during the surgery. That has been corrected. We’ve seen the evidence of that ourselves with his improved breathing. The question then, is why is his esophagus still compressed? It may be an artery. It could be that there is still some ligamentum attached or it could be something else.  It could be both. Ligamentum, which is basically just a bit of fibrous tissue, cannot be seen in MRI, CT scan, or any other test. Since no one is 100% sure what it is, there is no way of knowing whether or not it can be corrected. Was this always here? Is it new since surgery? Since Apollo never had a swallow study or Upper GI before the surgery, we don’t know.

The other thing is….Apollo’s left subclavian artery is no longer attached and functioning. Your left subclavian artery is the artery coming off your aortic arch that supplies the blood to your left arm and neck…It did function before, that is clear in his MRI images…but now it just kind of “fades away” as his cardiologist said. He confirmed this finding in Apollo’s blood pressure…his right and left arms have different blood pressures. What. The. Heck? The cardiologist doesn’t know where the blood in his left arm is coming from. Did you hear that, my friends? He doesn’t know. It may be traveling up through his head and coming down that way, but he’s not really sure.

This, according to our cardiologist, is most likely a complication from the double aortic arch division.

On top of this, he has grown new blood vessels since the double aortic arch division. His body, apparently trying to repair itself, is growing new vessels, but these may be interfering with things as well.

At this point, according to our cardiologist, everything is on the table. Surgery may be a possibility, but they have no idea of whether or not it will help his esophagus. Or how much it will help. Or for how long. Furthermore, the area is now full of scar tissue which makes the surgery more difficult and he has a higher risk of complications. Interestingly, the doctor in Chicago who reviewed Apollo’s case said he would go in through the left side again, not through the chest.

So why not just leave things are as they are? First off, while having a g-tube keeps him fed, it in itself is not risk free. He’s has three infections in the three months he’s had it. He’s eating mostly formula, not food. And the longer he has the tube the less he wants to eat. Not to mention, his is at major risk for choking when he does eat. When food gets stuck in his esophagus it pushes on the soft spots in his trachea and he can’t dislodge them. He’s has several choking incidents, one bad enough I had to call 911.

And now that his left subclavian artery isn’t working, his is at risk for other complications. Our cardiologist said this is usually okay in kids, but as he gets older it will be more of a problem. He may lose function in his left arm. He may get dizzy and lose his balance as he gets older, he may not be able to keep up with is peers in physical activity. If I understand correctly, his smaller, younger body can function with blood flow like this. His adult body may not. In his cardiologist’s words, “he will have to be followed closely” by a cardiologist for the rest of his life.

Don’t let that smile fool you. He screamed for so long and so hard  the cardiologist had to call in a nurse to help with him just so we could have a conversation.

Unlike the double aortic arch division where there was no decision-making (surgery was 100% necessary), there are a lot of choices to be made now. We are scheduled to go back and see his cardiologist in September. He wanted to give us time to digest this, understand it a bit and be able to formulate more questions.

Facebook Comments

41 Responses

  1. I glad they are saying in top of it and you are too…

    Deep breaths 😉

  2. Well that is a lot of information.That is so much for you guys to have to digest and work out. I will pray that you find the answer for Apollo and come to the best decision.

  3. Don’t know what to say – except that I’m still praying for you!

  4. Marguerite Wood

    We are friends of Jean & Sandy`s we have been praying for Apollo and will continue to do so. If it okay I would like to give this infor to a couple of friends who I know will intercede for him. Stay strong God really does work miracles and we will pray for one.

  5. Gosh Renee….so much.Praying for you!!!

  6. cecily spencer

    I am so sorry this is so hard. we are praying for him and you.

  7. praying for God to provide you with a miracle. Apollo needs one.

  8. This may be a silly question, but I have no experience with feeding tubes. Why can’t Apollo have liquified food in his tube instead of formula, it seems like that would be better for him at his age. This whole situation is really lousy for you guys, no clear answers, no way to make the decisions easier.
    Love and prayers.

    • Don’t mean to jump in..but as a health care professional I can tell you that the tube feed will provide Apollo with so much more protein, calories, fat, vitamins, minerals, carbs etc than any pureed food would ever be able to. Also it is a tiny tube and gets clogged VERY easy. Apollo gets I am sure many free water flushed inbetween his feeding to keep the tube patent.
      It is a very easy digestible formula also. Easily absorbed in most. In Apollo’s case this isn’t too much an issue , but it is for people who have lower GI issues. In some it does cause loose stools though..that’s another topic…

      It would take ALOT of say pureed carrots to even come close to a cup of the tube feed. Renee could give you an idea of just how nutrient dense it is. It is similiar but not exact to say a can of Ensure or Boost.In the hospital we give a similar solution called TPN through a large vein.

      This is simply the easiest way for the time being to give Apollo his nutrition right now. As Renee points out it is also a crummy way as the tube gets yanked and pulled and infected a good amount.

      Sorry Renee to answer questions for you. I know this is all alot for you and can at least help with the generic questions here and there if that’s ok.:)

  9. Yeesh, this is so complicated! Are they suggesting further imaging studies (CT angiogram, maybe even cardiac catheterization) to better understand his vascular anatomy? Some vascular abnormalities can be repaired by catheterization (all within the vessels, no open surgery) — might be worth asking about. I’m sure it’s something they’re considering.

    Continued prayers for you, him, and family.

    • bakersdozenandapolloxiv

      Robyn- we will be discussing those issues at our appointment next month. He wanted to give us time to absorb what he told us and think of more questions. The cardiologist did specifically mention catheterization as a possibility- not necessarily for repair, but to find some answers.

  10. 🙁 🙁 🙁 Still praying

  11. Praying for wisdom for you and Chuck as you take in this news and decide on the next steps. Praying for Apollo and for healing. Praying for the other children as I know the demands of Apollo affect everyone. I can’t imagine how overwhelming this all is.

  12. Emily from NZ

    Apollo is so cute! And he looks so happy! It’s hard to believe he’s so sick! Poor kid! Praying for wisdom for you, Chuck and the doctors.

  13. Stunned… that is how your post left me. I am praying for you and your family.

  14. Don’t you just love being a freak of nature within your obscure abnormality? I am really sorry you have such hard choices ahead. I hope they can come up with a great plan to get this all fixed.

  15. I’m so sorry to hear this. Really. The pic where his blood pressure is being taken is SO sad. Nearly makes me cry. His POOR little expression. I just want to jump into the computer and take the tests for him. And the problems. I can’t imagine how hard it must be for you guys as parents to see that. Regardless of whether some other child is sicker or sorer (more sore??). I’m guessing the less he swallows the weaker the swallowing muscles, even though we still swallow saliva etc. My bro had a trachy for 6 mths or something after a brain injury, and he was very prone to choking (which was a problem as his face and jaw were all wired together). He was an adult, so had swallowed fine all his life but they still had to take some time to re-teach him to swallow (from trachy, not the brain injury). One day recently I was eating hot chips (you’d call them fries I think?) and I ate too many at once. And I had that HORRIBLE feeling like they are stuck and won’t go down. And I thought “I bet this is what poor Apollo must feel.” It’s really yuk and scary even though I know it will go down.

  16. Oh, my…. I have no words… But am praying earnestly for you as you sort through the decisions and follow the Lord’s leading as to what is best for Apollo. God Bless y’all!

  17. Cannot imagine how overwhelmed you must feel right now. I am so sorry! Covering you in prayers for peace for your family and for answers and healing!

  18. I have a question, and please do not be offended. If there is no way to do anything for him to eat, if this just cannot ever be fixed…can he just stay on a tube? Can he forever have that? I mean, he will grow, and be healthy? That is, of course, not optimal I just wonder are there children who always have a tube and never eat regular food all the way to adulthood? I know that is not what is desired naturally, but I am just curious. I feel so happy to see pictures of him growing and looking so much fatter. But he has a lot of health problems, and he cant do everything that I am sure he would love to do. So I know, it isnt an answer. Ok he is on tube, now everything is good because he can gain weight-I know that is not the fix for all of what he has going on.

    • There are. Some are kids with a severe allergy to almost all types of food. i have seen shows about this. No not optimal. And again the chance of infections etc are very high. I have has myself and know other say Crohn’s or Colitis patients who cannot( or could not) tolerate eating and are also fed via a vein with TPN( sorta like tube feeding). Would one call this “healthy”??…probably not…but it is a very neat medical advancement that would leave many without life if it were not possible. It really is an individual by individual basis. Have I heard of kids as young as Apollo with tube feed continuing through adulthood…not many..but they are out there…

    • bakersdozenandapolloxiv

      Jo- Liz gave a great answer, and I’ll add some specifics to Apollo here. Yes, he can live on nothing but formula, there are adults that do that. However, since he has no digestion issues, the problem is getting food into his stomach, we plan to supplement with food. I have given him fresh vegetable juice (like Chuck and I drink) since it is so thin and goes in the tube easily. Our good friends whose son was tube fed for three years just put whatever they were eating into a blender, liquified it and put that in his tube. I think we will do both. Right now he is on a high calorie formula so he can make up for his lack of growth. The whole tube feeding thing has been a bit overwhelming, but we are now feeling much more comfortable with it.

      • Another thing that you Renee kinda touched on in a previous post was people starting to hand Apollo say an apple slice while out and about. That he is old enough and people want to share.

        Eating has so many more complex entities to it than simply giving us nutrition. If it was only that simple we would all be a healthy weight ..right? lol.:) Sharing a meal with family is so important. Foods, smells…I am sure we ALL have memories associated with them. Something like blending up things to a liquid like the veggie juice or anything else that won’t say clog the tube , but the family is also eating is a BRILLIANT idea. As long of course the nutrition requirements are met all around and not “filling up” on say super low calorie(yet high vitamins and nutrients) veggie juice.
        Food, and our associations with them, are so complex. Yet can be such a positive or negative experience. Like Apollo associating choking with eating…Bless his heart. Or say me associating my Chia seeds in my oatmeal with giving me “super powers” lol..

        It is easy to think if worse came to worse maybe he could just live on the tube feed forever….however since Apollo doesn’t have any digestion issues I (we all) pray so hard that he will be able to eat by mouth more and more as time goes on.

        Again, liquifying some of the foods the family is eating is BRILLIANT!

        • bakersdozenandapolloxiv

          Liz- Chuck and I have discussed how thankful we are he CAN eat by mouth, even if it’s just a few bites. Even if he has to be tube fed through is teen years, he could at least go to a party and nibble on foods…he could go out for pizza, even if he couldn’t eat a whole piece. Hopefully then his friends wouldn’t be reluctant to invite him places because he “can’t eat”. Does that make sense?

  19. Just reading this overwhelms me. I can not imagine what it is like for you and Chuck. I think of your little guy often and pray you will eventually have answers that will help him. I actually have a question regarding the juice box. You said he didn’t drink any…can he choke on liquids too? Or does he avoid due to fear? Which honestly I could totally understand.

    • bakersdozenandapolloxiv

      Kris- I can’t say why he won’t drink the juice, he just doesn’t. He does often cough and sputter on liquids, but drinks water daily by his own choice. He doesn’t seem to be aspirating, so I think it is difficult but not dangerous.

  20. I’m horrible at commenting but wanted to let you know we are praying for you all. Hugs from north dakota.

  21. When Apollo got his g-tube put in, you had said that later on there would be a sort of replacement tube, shorter than the first, right? Did he get that yet? Is there any chance that that will reduce the number of infections?

    The Lord is with you, and Apollo, no matter what happens. I’ll keep praying.

    • bakersdozenandapolloxiv

      Anna- his surgery to put the Mic-key in is scheduled for September 17th! I am looking forward to it and dreading in equal parts…

  22. Liz-thank you for your explanations. I was wondering about the water too Renee, I had thought perhaps if he didnt drink juice, then he didnt drink. It seems like he would have to, because his mouth would be dry thought he is hydrated from the tube I assume. I am praying for you guys to find the right answer… I cant imagine how you must feel.

    • You are so welcome. The liquid from the tube feeding itself is usually enough to stay hydrated. The “extra” flushes are USUALLY just to keep the tube from clogging..say 25ml to 50 ml before and after each tube feed. Since Apollo is so young and smaller those extra flushed actually add up to maybe a cup. I do not however know how much Apollo’s flushes are. In the hospital sometimes we actually flush with Normal Saline(salt water) if the patient is having electrolyte imbalances.

      He does sip water so his mouth probably isn’t dry…maybe he chews gum..I know my 23 month old does….lol

  23. I don’t know what to say!! I’m sending you all prayers – for perfect healing for Apollo and Divine Guidance for you, Chuck and all medical personnel involved. Hugs!!

  24. Oh what an overwhelming visit! Thoughts and prayers going out to your whole family! Glad to hear Apollo will get his Mic-Key button soon. They are soooo nice and seem to get yanked and pulled less. Hopefully then his insertion site can heal well! Prayers for your adorable little guy!

  25. This is overwhelming. Praying for little Apollo every day- you’ve all been so strong through all of this

  26. […] for a moment, and imagine that schedule with a two-year old. Nap? What nap? Apollo did so much crying at our last visit to Children’s that we decided to take Enoch and Tilly along this time. The visit with the cardiologist is just […]

  27. […] his heart was repaired and after a visit or two he wouldn’t need follow-up. Then in August as the cardiologist described the complications from his first double aortic arch division we were told he would need to be followed closely for the rest of his life. Now, no follow-up? I […]

Please share your thoughts!