Vascular Rings and Bronchoscopy {Missed Diagnosis}

Bronch
Wow. Where to begin? First of all, surgery went well, we came home yesterday afternoon, and Apollo is in fine spirits. So fine, in fact, that Tilly said this morning, “Mom, is he just happy or is that from the medicine?” I am giving him acetaminophen and ibuprofen (rotating between the two) every three hours per doctor’s orders. He does begin to fuss at about the 2.5 hour mark, so I am assuming he is/would be in some pain without it.

Since most of you are probably wondering what the outcome was, I’ll start there and then add details. The adenoids (which the doctor described as enormous) came out quickly and easily as anticipated. 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 boarderline” “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.”

So what does all that mean? To the doctor is means, maybe he has a vascular ring and maybe not, but it’s not worth pursuing since he’s obviously doing fine.

What does it mean to me and Chuck? That he may have a vascular ring and fixing it could drastically improve his quality of life.

And those, my friends, are two completely different meanings.

This is the ENT (who is, I have no doubt, a capable doctor and surgeon) who has had no interest whatsoever in listening to Apollo’s breathing or listening to Chuck and I when we want to bring it up. He says taking the adenoids our will fix his sleep and feeding issues. And honestly, I would be thrilled with that. I am more than willing to be optimistic that this the magic cure. It is possible that with the adenoids out, he will breathe better, eat better, sleep better and be fine. But what he says just doesn’t jive with what the pulmonologist (who has listened to his breathing extensively with his stethoscope and watched him breathe and retract) says. You know, “it’s like he’s breathing through a straw” and “he has to work so hard to breathe it’s like he’s running in place all the time”. So which doctor is right? I have no idea.

The ENT’s job is over at this point. He won’t even be seeing Apollo for a follow up visit. Apollo’s next appointment will be with the pulmonologist on February 7th. This seems like the perfect time frame to me. Enough time for Apollo to heal and for us to see how much of a difference the adenoids are making. Chuck and I like and  trust the pulmongologist. He has spent so much time just listening to and watching Apollo’s breathing. We feel confident that if says his breathing sounds better and we see an improvement that we can put this behind us and look forward to a healthy, thriving boy.

I have a lot of conflicting thoughts. I want Apollo to be “fixed” and think this is all over. But when the ENT says things like, “if his symptoms get worse” I keep thinking about how they worsened over the last few months. About how I took him back to the doctor because suddenly he was breathing hard just from running around and crying. I think about the pulmonologists concern of his retracting and the ENT saying “No, the adenoids wouldn’t make him retract”.

Oh, and the ENT keeps saying Apollo “is just going to be a really allergic kid”. Before the surgery, I heard him telling someone right outside our room, “Everything on this kid {speaking of inside his ears, nose, throat} is just a point of potential inflammation”. He is attributing everything to severe allergies. This is possible, or course, but Apollo doesn’t have so many symptoms you would expect with severe allergies: runny nose, red and runny eyes, skin rashes. But then, when has he ever had the “right” symptoms of anything?

If you have any questions or comments, please feel free to leave them. Lorri Dean, I’d love your thoughts on all this…

Best part about the adenoidectomy and bronch? They’re over and we all survived!

The worst? The results, like everything in Apollo’s life, were somewhat inconclusive.

Best part about still nursing my 17 month old? It was a wonderful way to comfort him after his surgery.

Worst part? He wanted to nurse before surgery and couldn’t. This led to many, many tears.

Best part about calling breastfeeding nursing (as in, do you want to nurse)? It’s straightforward and has very little potential for embarrassment i.e. no asking for num nums, or mama juice, or any other cutesy term.

Worst? Every nurse who walked into our room pre-op said, “Hello, I’m So and So and I’m a NURSE” which inevitably started a new round of tears for Apollo.

Okay, your turn.  Grab the link for your Best and Worst Wednesday blog and be sure and leave a comment so I know you’re playing. If you don’t have a blog, feel free to leave your best and worst in the comments.

Thank you all for your thoughts and prayers.

{Edited to add: The ENT completely missed the diagnosis of a double aortic arch. The day after this Apollo choked on a carrot and passed out. He was transported by ambulance to the hospital where he was declared fine. January 18th he was finally diagnosed with a double aortic arch during an MRI.}

(Visited 480 times, 1 visits today)
Facebookpinterestrssyoutubeinstagramflickrby feather

26 thoughts on “Vascular Rings and Bronchoscopy {Missed Diagnosis}”

  1. I’m glad to hear that Apollo is doing well. I have no advice to offer, but I can say that doctors aren’t always right. I personally don’t trust a doctor who thinks he can’t ever be wrong. The best doctors are the ones who look at the whole child, listen to the mama, and look for answers- not the ones who “know” they are right and refuse to look at anything else. I’m glad you have the pulmonologist! Hopefully your visit with him will bring answers!
    Melissa 🙂

  2. Okay, I just read the vascular rings link you provided. It all sounds so much like Apollo. If there is narrowing and the child fits all the symptoms… I’m sorry your ENT isn’t listening. 🙁
    Melissa 🙂

  3. Melissa- I KNOW he has almost every symptom on there! And the ENT was basically saying since he hasn't had those symptoms, it doesn't matter. Soooo frustrating 🙁
    Sent from my iPhone

  4. I knew it!! Oh wow!! Hope you explained Brenden’s story to him! 11.5 years for a double aortic arch/vascular ring to be diagnosed…and he thinks Apollo is old. Makes me, once again, feel extremely blessed that someone finally listened to me. :*)

  5. I’ve enjoyed your blog for some time now but I think this may be my first comment to you. I enjoy reading about you and your amazing family, especially the misadventures of Avi, Mordecai and Appollo.
    I am hopeful that Appollo’s troubles will soon be over. I don’t remember if you’ve explored gluten sensitivity with him or not but thought that this post (http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html) might be of interest to you. I discovered that I am sensitive to gluten myself during my most recent pregnancy at the ripe old age of 38. My symptoms involved neurological issues, my digestion was completely fine. Since gluten often creates a state of chronic inflammation for those who are sensitive, I wonder if this might be something worth exploring for Appollo?
    At any rate, I hope that he’s feeling better soon and that you all will be getting better sleep soon too!

  6. Wow! I’m glad the surgery went well. It seems like Apollo has every one of those symptoms for a ring/sling.I’m so sorry that the doctors don’t see it! If the adenoids removal doesn’t help, maybe you could record parts of Apollos day on a video camera and show the doctor how he retracts after running around the house, how difficult it is to feed him and how many times he wakes up every night.

  7. SO glad that the surgery and bronchoscopy went well.
    I understand your frustration with the ENT and totally agree with your feelings. My husband and I have multiple health problems – with him that includes Chronic Lymphocytic Leukemia and Diabetes for over 50 years. I have a rare type of arthritis that most nurses haven’t ever heard of. We have dealt with many doctors over the last few years and we have learned to listen to our “gut” feelings. If you aren’t comfortable with this doctor,feel free to ask the Pulmonologist to send you to someone else.
    I have found that you have to trust and like your specialist – especially if you are going to be working with him or her over a period of time. Through trial and error we now have some specialists that we really respect, trust and like and who listen to us ! You know your child better than anyone else and a good doctor will respect that and listen to you. A doctor that has made up his mind without really listening to you can make serious mistakes. You two are great parents – your children are blessed to have you. I will be praying for all of you.

  8. So glad that you’ve found a pulmonologist you can work with, who is getting to know you and him. That’s really great news. Hope this is the beginning of things getting better!

  9. I just went through rounds and rounds of tests with a GI doctor and I have never been unhappier with the medical community. You would think these people know what they are doing, but so many of them don’t. Get the scope pictures and get a second opinion.
    I was told I was positive for celiacs on a blood panel, so they put me through an entire invasive procedure to get biospys to confirm: I WAS NEVER POSITIVE ON THE BLOOD PANEL! Not only did this cost extra time and money but it caused pain. I was positive for hypo thyroid. “We must have read the tests wrong… You need to see a different doctor.”
    Well I sure would of liked too know that several weeks and tests earlier.
    I can’t tell you whats wrong with your sweet baby, but I can tell you to get a second opinion. In my experience find a doctor who is elderly (and I don’t mean like 90) because they have so much more experience. They can diagnose and fix things a younger doctor never even knew about.
    I’m 17 and I am still going through all of these problems, Getting alergy testing and food testing. Don’t say he doesn’t have these because he could have reflux, swollen throat and airway because of an allergy. It could cause severe inflamation, including in the stomach ( you say he doesn’t like to eat much, because it hurts).
    I don’t want to judge, and I fully believe in breastfeeding for 1 1/2 to 2 years. But I find it strange that you just let him nurse whenever. I understand that a big part of the reason is because you worry about him gaining weight. But maybe if you limit him to certain times of the day for nursing he would start eating other things as well.
    Good Luck and Merry Christmas 🙂

  10. My underweight son got seen by a whole series of doctors, pretty much all of whom commented on what ginormous tonsils and adenoids he had. The dietician M.D. thought they were probably causing him to eat less, causing the low weight. The ENT would have to approve removing them, and the ENT said, “Yeah, they’re really big, but they’re not causing problems, so they don’t need removing.”
    So… I can totally sympathize with you.

  11. I’m going to suggest something totally different–take Apollo to a Chiropractor.
    My daughter (5 months) had her cleft lip repaired 2 weeks ago. Since her surgery she has had trouble eating (literally screaming in terror at her bottle). When we were struggling so hard to EBF our Craniofacial team were not interested. They suggested that I pump, and that never really worked. Thankfully, I received a lot of donated breast milk from friends.
    After several calls to the Craniofacial team we finally got a referral to speech (who deal with oral aversions). In the meantime, we went to our wonderful family doctor who recommended we take Kestrel to a Chiropractor. And when I did some research I discovered that chiropractics is where children with eating problems are often sent.
    We are only one day out from seeing the chiropractor and it has been a miraculous day. It’s like I’ve gotten the baby I gave birth to back. She ate well and happily today. The chiropractor made adjustments to her neck and jaw. I didn’t totally believe that it would help (despite seeing a chiro myself) but am so happy that she is eating again.
    While it does sound as if there is a mechanical problem going on as well–chiro might help in the meantime.

  12. I feel your pain in so many ways about doctors not listening and/or giving conflicting diagnoses. Ugh! At least something was done that will impact him in a good way. My thoughts and prayers are with you.

  13. I know! When I read it, I was shocked that you didn’t get a diagnosis! It’s so obviously Apollo, down to each and every symptom. Add that to the fact that he DID have an abnormal bronch with narrowing as the ENT said, and I’m just floored that the ENT is blowing this off. What’s that about walking and talking like a duck, lol? If he shows all the symptoms of this AND has clinical findings during a bronch to confirm it, then it seems like he has it! Can the pulmonologist diagnose and treat this instead? Ugh, silly doctors. We’ve had some good ones that I’ve truly loved and others that I really disliked because they were arrogant and wouldn’t listen. I know you’ll get answers. Hang in there!
    Melissa 🙂

  14. I really hope this adenoid removal provides a most miraculous difference. It is so frustrating dealing with medical people that don’t listen. I hope you’re done! If not I think you just ask for a referral to a different ENT, one with ears that work.

  15. Renee, your ENT is being an ass. (I realize this may make you not post my comment, but I had to write it down anyway.) He may be missing an obvious diagnosis AND he’s not interested in listening to you or your concerns about the well-being of your child. This doctor does not deserve your time, your money or your trust.
    I very much hope that you have the option of seeking a second opinion from another ENT. I don’t know what the insurance situation is, but I presume it’s a question of money or red tape. But since you already have all your diagnostic tests, wouldn’t you just need to pay for a consultation with another ENT, and not the procedures?
    I don’t know, I’m just guessing here. 🙁 And you are in my thoughts! Hang in there!

  16. Dear Renee,
    We don´t know each other, I found your blog over a friend´s friend´s blog and enjoy reading about a large family. I´ve only read some part of Apollo´s story, and I am not a mother, but I am under the impression that you should stick to your instinct concerning the ENT. Why don´t you just get a third opinion? Don´t trust someone who treats you (and your child!) this way!
    Regarding the allergies — I´ve always been said to be very allergic (and tests have shown this), but I´ve never really had so many symptoms. Maybe the ENT is right about Apollo being allergic, maybe not, but I would definitely try not to get upset about something someone who doesn´t even seem to care said. Try to find a doctor you trust and who will treat Apollo instead of waiting for him to grow all these symptoms (i. e. breathing problems) out or similar.
    Sorry for rambling even though I am a stranger.
    Courage and happy holidays!
    M.

  17. Your ENT is being a flat-out jerk in not listening to you. I think he’s written Apollo (and you) off as being one of those overly concerned, but not really getting it babies and mommas. SO glad you have another doc who seems to hear your mommy radar pinging.

  18. Renee,
    I just recently had a chance to read the whole blog post and noticed that you asked me for my thoughts. Okay girl, you asked for it…. 😉
    You need to get a second opinion or go to him and ask him to schedule a CT scan to rule out genetic heart defects. Let him know that once you have a proper diagnosis, you’ll be better equipped to discuss whether or not surgery is necessary for YOUR son. If he is not willing to do that, walk away and schedule with another ENT or ask your general prac/pediatrician. Step over whoever you need to…. this is serious stuff.
    This ENT has absolutely no idea that there ARE children who are undiagnosed and that they DO have a better quality of life when the surgery is done. Can I have his number?! I’d love to send him my sons story!! He’s not a cardiologist and should not act as one. (grrrr!!!)
    Obviously, I’m thinking that Apollo does have a DAA/VR. I’ve felt that was it since the very moment I read your posts. I emailed you about it long ago because I felt that strongly….his symptoms were almost identical to Brenden’s. Maybe I’m wrong, but what if I’m not? I hope I am wrong!!
    Brenden was 11.5 YEARS when he was diagnosed and nobody would listen to me. The surgeon said that when he made the cut into one arch of the double aorta, his trachea and esophagus sprung out with such power, even he was shocked. He said it was like they were begging to be free…it was so tight in there he wasn’t sure how Brenden was actually swallowing his food and that if he ever had a serious respiratory illness he could have needed a trach. Because they waited so long to do the surgery (well, to be diagnosed), he has tracheomalacia. Thankfully he has never had to have a tracheostomy, but depending on his overall health and if his body is able to strengthen the trachea and esophagus on its own, if something ever happens to him….serious pneumonia or accident that causes distressed breathing….he may need a tracheostomy. We were also told, AFTER the surgery, that those teens that drop dead in P.E. or athletic sports, had heart issues that were undiagnosed….just like a Double Aortic Arch/Vascular Ring.
    How your ENT blows it off is just crazy to me, but I’m truly not surprised. I don’t understand why he wouldn’t send him in for an immediate CT scan to be 100% sure. Obviously, our ENT was going to send us out the door with a dx of “seasonal asthma” and told to come back in the fall when Brenden was “sick”. It wasn’t until I just started sobbing at his feet, that he gave into my pleas…I was so desperate for someone to just listen to my words, to my feelings as a mother. I didn’t care what the cost was because I knew something was wrong….and if, for some reason, I was wrong….well, I wanted to be 100% sure of that as well. I was shocked when he gave me more than blood work…I felt like he was really trying to make me feel like he cared. When they did the CT scan and found the genetic heart defect, they scheduled surgery and all the other tests (EKG, etc) they needed to do before the surgery. He was dx July 27 and had surgery on August 22, 2005. The ENT was shocked, but had stopped all his clinic patients for that time to come see the results and take me back to show me diagrams and paperwork of what my son had and what needed to be done. To him, there was no question about what needed to be done. He never once said, “Well, he seems to be growing well and doing well…surgery isn’t necessary.” He transferred us to a Cardiologist and a Cardiovascular Surgeon immediately.
    As for Apollo’s growth and that he looks good? That’s nonsense! My son is an IDENTICAL twin and kept the same growth rate (even 1/2-1 lb heavier than his brother and usually 1/4″ taller). This is why his condition never stood out. All the pediatricians, ENT’s, ER docs, etc, etc, etc…. constantly compared him to his brother. It’s 100% nonsense because it doesn’t mean anything other than Apollo is a fighter. They cannot use that as a reason for not pursing his issues further.
    Renee, don’t give up. Keep fighting. You have the bronchoscope results, so you can demand they pursue the testing further to knock out the DAA/VR possibility. You know that (by reading my blog) I wasn’t thinking “heart” when they did the CT scan….we were supposed to be looking at his lungs/airway. A heart condition was the last thing I even thought about. The fact your ENT even brought it up and then pushed it aside is just…..negligent. If you don’t need a referral, go straight to a cardiologist….you’ll probably be going to one anyway.
    Good news is… my son is amazing and healthy despite the ignorance of years of “specialized” medical care that treated him with medications that could have killed him (albuterol/combivent/etc). He plays sports and only has some minor aching from the scar tissue / muscles as he grows. He says he breathes so much better and can actually swallow food without feeling like he’s choking. He still doesn’t seem to ever get a minor cold (like the rest of us) because his airway is obviously still having issues from the tracheomalacia, but it’s so much better than it was.
    My prayers are with you and Chuck as you decide what the best route is for your son. I truly believe that God never stopped filling me with the sense of urgency and why was that? If this surgery was something that wasn’t “necessary”, then why did I feel the need to fight for my son? God knew that Brenden needed this surgery and he led me to the one person who would listen…even if that Dr didn’t think anything more than Seasonal Asthma was the issue. Maybe that day our ENT learned a few things. 1) Never dismiss a mother who knows something is wrong, and 2) Humility is a good thing.
    Praying for you all!!!! I’m here for any and all information you would like. Facebook me if you want to talk or just tell me how frustrated you are with doctors. I’ve been there!! 🙂
    HUGS!! XOXOXO

  19. Pingback: Preparing for Heart Surgery {Seattle Children’s Hospital} | A Baker's Dozen and Apollo XIV

  20. Pingback: After the Heart Repair | A Baker's Dozen and Apollo XIV

  21. Pingback: I Quit: Raising a Child with Complex Health Needs

  22. Pingback: Apollo's Surgical Plan August 2014

  23. Pingback: I'm Angry at My Son's Doctors (and I won't apologize for that)

Leave a Comment

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.