Update on Apollo January 20, 2012

What’s Apollo  hiding? A tough little heart that just didn’t develop quite right.

I know I said I wasn’t going to blog about Apollo today, but I have an update.

Our family doctor called Friday. He talked to cardiologist who assisted with Apollo’s MRI down in Seattle. He told me that the left side of his aortic arch is a functioning artery. This is  bad news. It means that they now have to cut/remove a working artery, with the risk that entails, and also make sure that his heart will still be able to pump blood efficiently.

Image taken from Penn Medicine.

In the second image, you can see how part of the aortic arch goes to the left of the trachea and esophagus. In the best case scenario, this would just be an old vessel that didn’t recede during development like it was supposed to. In Apollo’s case, it is pumping blood from his heart.

A few people have wondered why his symptoms are difficulty breathing and eating if it is a heart defect. In the diagram, you can see how the artery wraps entirely around windpipe and esophagus (where his food goes down). Basically he is being strangled 24  hours a day by his own heart. As he gets bigger the constriction gets tighter and his symptoms get worse.

Our doctor also told me that the cardiologists who viewed Apollo’s MRI “wondered how this could have possibly been missed during the bronchoscopy due to the severe restriction of his airway”.

Here is what I posted on December 21, the day after the bronchoscopy was preformed:

 As far as the bronch the doctor said (and I am going to quote him a lot here): “There is some slight narrowing, but not too bad.” “It’s a bit abnormal.” “He could have a vascular ring or sling.” “It looks borderline” “I’ve never seen a patient this old get diagnosed with a vascular ring and then need surgery.” “If he has a ring, he’s probably grown large enough that it’s not a concern anymore.” “We’ll consider an MRI or CT scan if his symptoms get worse.” “Since he’s growing, he’s fine.”

I said to my doctor, “You know that ENT was convinced that nothing was wrong with Apollo beyond allergies and I think, because he is human, he allowed that belief to influence the way he read the bronch”.

“I think you’re absolutely right” was his answer.

We may pursue a formal complaint against the ENT (I have already requested all of Apollo’s records from our doctor’s office). I plan to carry a copy  with me to every doctor’s appointment and hospital visit (a trick I learned from the book Doctor Your Patient Will See You Now). I will be able see for myself exactly what he wrote in his report. For now though, I am focusing on getting Apollo what he needs.

Even though we are still waiting to see a cardiologist, they are working on Apollo’s case already. The cardiologist was working already to meet with the surgeon and pulmonologist to discuss his case. I feels good to know they are already meeting and planning for his care.

{Okay, I think I have my button fixed. Could someone give it a try and let me know if it’s working? Thanks!}

18 thoughts on “Update on Apollo January 20, 2012

  1. Renee,

    I don’t know if I’ve ever posted here, but I feel compelled to today. I have been reading your blog for a long time now and have followed Apollo’s story closely. I have a 16-month old son and related to you on that level.

    I’m really sorry to hear that the artery that needs to be cut/removed is a functioning one. I will be praying fervently for your sweet boy and for you, Chuck and your other children as you face a risky surgery.

    I think that it would be very kind of you to file a formal complaint against the ENT, as he is a possible danger to the lives and well-being of his other patients. He needs to be investigated and you would be benefitting others by taking the time to make sure that happens. When you are ready, of course. First on the agenda, get Apollo better!

    Thank you for the update!

  2. can’t help with the computer stuff.I am blown away at how great you explain apollo’s condition to your readers. As an RN and hub a Dr we couldn’t have done better. We were looking at basically the same pic last night that you posted as i updated him on Apollo’s condition and I prayed for him.

    It is so true. My mother in law was having such awful panic attacks in the hospital. They got a Pulmonologist in there and funny becasue she had GERD he said “she has a classic case of acid reflux” i”m sorry I was there and she was saying she was “going to die” and ” can’t breath” “not getting better only worse”….then with a bit of pain meds she would get better….total panic attack..funny she then saw a pdoc and got meds switched and felt better…

    Drs will always go with what they know when something remotely presents as their specialty. I have health issues and I have gotten dx from 3 dif spec 3 dif dx..

    Glad you are on the right path. This is such a rare defect.

  3. I used to be quite skilled at html but I haven’t done it in awhile… lol.

    But I think the biggest reason it wasn’t working was the ‘http://’ was missing which tells it to look for a new site… without that (the computer stuff is coming back to me now!) it tries to link internally… because you can use “/blahwebpage” as a shortcut (instead of http://www.mysite.com/blahwebpage) when linking within the same site to keep codes shorter.

  4. Formal reports do awesome and can help other families in the long run, our delivery report read “no complications” my response so umm placental abruptions on a fused placenta sharring blood vesels acute kidney failure (resolved as soon as I delivered) and a twin born with no apgars is a no complications, for us they changed protocols and this has since saved another family from going through what we go through every day, we also carry reports (they even directly send me all radiology reports. With the amount of people you are soon to meet you need it and I can reference and so can they!

    On a side note I was shcoked how fast the MRI was we waited a year for K’s and J was just reffered part of me wished we lived where we could go for one faster, the day Apollo had his we got the call 3 weeks away. It never happen that fast.

    I would go up and edit but my up cursor is broken, our formal report was called a “critical care case review”

  5. I can vouch that the simplest comment can carry a LOT of weight in the Army Medical system. Not sure about the civilian world. But, when my, now, 11 year old was 1 month old, he and I got very sick. In a follow up appt. for my son to get a basic check up (after my baby had been in the ER) I mentioned to the Doc that I was still very sick with a stomach flu and wondered what I might be able to take to help my symptoms but wouldn’t affect my milk for nursing. He blew me off, I pressed on gently. He flat out told me I would need to make an appt. for myself – that this appt. was for my son. I started to cry and told him that I needed to take care of my son by taking care of myself and that I was his primary care all day long. He blew me off. So, later my husband and I wrote a formal complaint. A month or so later… that doctor was “reassigned” or in other words fired! I’m sure I wasn’t the only one who had had issues with his care.
    I encourage you follow the protocol for reporting your comments on that ENT doctor. Someone’s life down the road may depend on it.

  6. One thing that I forgot to ask…

    Is there anything that they can do to help Apollo’s symptoms between now and surgery? How long of a wait are you looking at for surgery?

  7. Sometimes Doctors get too busy, or like you said they already KNOW the answer, so it is what they see. This happens with simple things and big things. My mom is an RN and we were homeschooled, growing up she taught us a lot and even played mock nursing boards as we got older. I rarely see the doctor now for myself or children without having at least an idea of what is wrong, of course nothing serious like what you guys are going through but small stuff. The biggest thing was our son’s ears, he needed tubes. Doctors just shuffled us around and we spent 4 yrs in the military system getting no help, I knew his diagnosis and what he needed, I knew my baby hurt and couldnt hear. We finally got a civilian doctor when he was 4. He had several surgeries and only lost about 25% of his hearing. He stopped screaming, doctors stopped saying “he might be autistic” due to behavior. He learned to read and swim within a wk, because the swimming had hurt his ears and he couldnt hear the sounds completely enough. Doctors often do not listen, I do not understand why. It is frustrating on so many levels, especially when you know the answer and you cannot change it for your child. There are some who listen, maybe the others are just too busy or tired.

  8. Feel free to post about Apollo anytime!!! There are so many of us who love him (and you and the rest of your family!), and we appreciate all the updates!

    I tried your new Pray for Apollo button, and it worked just fine for me. But speaking of buttons, your regular blog one that I have had on my blog’s blogroll for quite some time still directs people to your old blog. I see that button here on your new blog, but not a code for it. When you get a spare minute (yeah, right!), maybe you could make and post a code for it, so people can update that, too? Does that make sense?

    I’ll be praying for Apollo and for all of you as you deal with this frustrating situation.

  9. so glad to hear there is finally a diagnosis. you’ve been such a loving, nurturing, patient and persistent mother. i know you’re not seeking glory, but i must say, “good job renee!” may the Lord continue to be your strength and wisdom amidst these times and moments ahead. we’ll continue to pray for apollo and your family.

  10. Renee, I am praying for you and you family. My younger brother was born with heart problems, and he had multiple surgies a couple of hours away. I remember being moved about to other families, and missing my parents and brother. God is able to move His body to care for your families needs. I know we’ve never met in person, but if I didn’t live states away, I’d offer to help in person. For now, I’ve added Apollo’s button to the blog my husband and I write.

  11. Your medical update is incredibly clear (and I say that speaking as a pediatric specialist with interest in cardiovascular disease!). One tiny nitpick: Left vs. right is always the PATIENT’s left vs. right — so the functioning left aortic arch is the one in front (i.e. the one that’s normally there), not the one in back that normally disappears.

    Either way, as you say, it complicates things if blood is flowing through both of them. I hope it’s something they are able to fix without complication. If you have concerns about the care and advice you’re getting at SCH and are willing to travel, it might be worthwhile to find out who in the country (if anyone) specializes in treating this particular condition. Even if he’s not treated there, it might be helpful to get a second opinion on management after seeing the SCH people. DAA may be rare enough that just finding an excellent pediatric cardiac surgeon (in an excellent children’s hospital, with good anesthesiologists, nursing, cardiology, etc.) is the best you can do (which is pretty good). I think SCH is pretty good on these counts but it might be helpful to do a little research about who else is out there.

    Email if I can help with that or other medical things.

    • Robyn, thanks for the input. I was a bit nervous about posting all of that because what I wrote is what I’ve gleaned from my own research, so I hoped I was explaining it right. And thanks for the clarification about the right vs. left. I definintely didn’t attend medical school and it’s been a long time since my high school P&A class.

  12. Pingback: Double Aortic Arch Division {Two Years Later} | A Baker's Dozen and Apollo XIV

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