6 Weeks Post Double Aortic Arch Division and Symptoms Are Worse
Apollo has been up in the night coughing to the point of choking again. We haven’t seen this in a long time. On top of that his eating is as bad as it’s ever been. He coughs and sputters less frequently, but it is still a struggle. He is up every 1-2 hours at night…and the other night he was making the strangest squeaking sound as he slept. Here is a short recording of his breathing.
Struggling to Breathe, Struggling to Eat
At the suggestion of you blog readers, I recorded it so I could let the doctors hear it. The sound is a sound that is nearly impossible to describe, but if I had to, I’d say it sounds like when you pull a balloon tight to slowly let the air out.
I Â talked to a nurse from pulmonology again on Thursday. I was nearly in tears as I spoke to her. The nurse was concerned enough by my descriptions of his breathing to give him an appointment for 9:30 Friday morning. Inspired by your suggestions, I also took videos of him eating and loaded them onto my iPad.
These two clips are of a totally uneventful, “good” meal for Apollo. He didn’t choke, he only coughed once. The video shows how much he retracts when eating…and how noisy his breathing gets. In the video you can see him arching his neck in an effort to breathe and get the food down his throat.
A Different Pulmonologist at Seattle Children’s Hospital
Armed with all this, I headed down to Seattle. Our pulmonologist was out of town, so we saw a new doctor. Both the resident and pulmonologist watched the videos and understood my concern. Dr. S thinks it is possible that the anti-anxiety medicine we are giving Apollo is making it much harder for him to breathe while he sleeps- hence the funky sounds. We are cutting his dose down (he can’t stop cold turkey) to see if that helps. He’s not sleeping for more than an hour or two straight anyway. Her other suggestion was to try steroids in case there was any inflammation…She thinks it is possible that the sound is laryngomalacia. I think she might have left it at that…but I wasn’t about to leave with a few “suggestions” and “wait two weeks”. Especially when it doesn’t describe the coughing and choking at night or his difficulty eating.
We Need to Identify the Problem
I told the pulmonologist that doctors keep finding problems with Apollo and fixing them…but not fixing Apollo. Nobody has looked him over head to toe to find out exactly why he was having so much trouble eating/breathing/sleeping. They find a problem and “fix” it, but no one knows the cause of the problems. They are treating symptoms, not Apollo as a whole.
She paused and said, “Well, the other thing we could do is just admit him. That way all the doctors can look him over, do their test and discuss them…”
“Let’s do it” I said, without hesitation.
So we are. At 10 am Monday morning he will be admitted to Seattle Children’s hospital. The plan is to have everyone (ENT, pulmonologist, GI’s, etc) look him over. He will likely have another bronchoscopy, have the GI doctors look at his entire digestive tract, and have a swallow study. He may have a sleep study and who knows what else done. All procedures that require anesthesia will be scheduled one after the other, so he only has to go under once.
Before we left the doctor said (in reference to admitting him), “I was thinking of going that way, but it seems like suggest a drastic, scary thing to say to a parent”.
Are you serious? After what Apollo has been through for the past year? Sending us home with a toddler who struggles to breathe all night like, chokes every time he eats, has failure to thrive, sounds drastic to me. Finally trying to get to the bottom of his health issues sounds like the prudent course to this parent.
He must still have an obstruction somewhere, he is so wheezy. You must be at your wits end, you poor things. I do hope and pray you get some answers this time – this has been going on far too long. Your patience has to be commended – I would have crumbled long before this! Good luck for Monday,
Joolz
Oh Renee,
just seeing this as I myself am up feeding baby at 3am…4:30am etc….I pray Apollo will have some answers about his health. I was going to ask you if you would entertain the thought to ask for another bronch albeit from another ENT or whoever. i see however you will hopefully be getting that.
All I can say is I know how frustrating this all can be. to have “problem ” after problem “fixed” yet the issues/symptoms are still there. I myself have taken many of meds…steroids,procedures.. ..and they swear “things look better” yet the same debilitating symptoms.
I know for you a parent it must be a huge devastation when you kind of thought that after his surgery he would have some improvement and not some worsening of symptoms.
We are going through our own extended family medical drama with a 1 yr old cousin. her name is Celia and they are having a hard time ruling in seizures vs movement disorders. please pray for her. She has these “episodes” that are heartbreaking. Not so much like a sz though. Her medical journey will continue her at U of M. I am glad we can go with them to the appointments there. You seem to take such good notes. It amazes me. do you hit “record” on your phone? i just know you have these long quotes from Drs and it is a very smart thing to do for some. you seem to have a system that is working though.
I will continue to pray for you and Apollo and family. This will probably be a very long journey. I hope at the very least you all can figure out the best way for Apollo to get his nutrition and go from there.How exhausting this all is for you.
Again, he is blessed to have you both as parents. Everything you can do you are doing. Just know that at least.:)
Renee,
I don’t even know what to say, except that I’ll continue to pray that you’ll be able to get the answers little Apollo needs!
So glad he is being admitted. That often helps in these more difficult cases. I remember it being a relief a few times when my son was admitted. I felt like there was a back up every time he needed CPR. I had to perform CPR more than 20 times in his first 6 months of life.
My advice ~ Some doctors don’t want to do the invasive or uncomfortable tests. We as parents don’t want that for our child either. However, Apollo is uncomfortable every second of every day. Sometimes doctors need to be reminded that the child is uncomfortable and needs help NOW! They get very trapped in the wait and see game. Also, keep your mind open to Eastern or alternative medicine. Two of our children have needed extensive Western medicine and some Eastern medicine to get to a more optimum health.
WE WILL BE PRAYING!
Blessings,
Dawn
Dawn, I don’t know how you survived it. The couple of times I’ve been afraid he was going to literally die were so terrifying. Made me think if he was my first he might be my last too…
Praying for you all and Apollo…
Enjoy reading your blog..
So glad hes getting looked at again, does he sleep any better on his tummy, my son had surgery for laryngomalacia at 5 months old and the only way he would sleep without his throat closing up was on his tummy, praying for you all.
Norma- as a baby he could only sleep on his tummy, probably from reflux (and maybe laryngomalacia). Now he thrashes all over the place.
I am glad that they admitted him, glad you are insisting on something more for him. For all of you. Will be praying for you, thanks for updating.
To make the doctor’s take you more seriously I would sit him in a chair or high chair and have him eat with no background noise. I see some retractions but he is smiling and laughing and moving around so much that this could be seen as the cause of it here. He is also shoveling down food so he clearly has a good appetite here. I don’t know if it was a glitch but all I heard was background noise or TV. I just don’t want you to be viewed as an over reactive parent to the doctor so I think these things would help get a more clear picture for them.
Praying for you all.
He wasn’t bad enough to have him admitted then so why wait 3 or4 days and then admit him? I know ” so the doctors can get together” but this hardly seems like a reason to admit him. It’s not like the doctors are all going to come in the room at once, they all have their different schedules. Please, please don’t put that poor child through un needed testing. I pray they will continue to check him out from head to toe and inside out to give you peace. Not a criticism at all, just a question, why don’t you feed him what he likes instead of forcing “healthy” options at him? He seems to eat things great, as you posted, in the hospital or when you go out for an appointment. I think allowing him to eat and grow is healthy at this point. I admire your wanting him to eat well but it appears to be asking a toll on him.
Jill,
Renee is absolutely doing the right thing! They waited several days to admit him because hospitals do not do the tests (often) and doctors schedules are inconsistent on the weekends.
Also, it is way easier for doctors to conference on a patient in the hospital when they have all seen the patient recently then as an outpatient.
As for your opinions about unneeded testing, I think it is quite clear from the blog that Renee and Chuck are trying hard to find out why Apollo is not feeling well. They have tried holistic and pharmacological interventions (in that order) without success. It seems like further potentially invasive testing is warranted and their physicians agree.
This is a family who is dealing with a complex medical case and doing the best they can. This is a stressful and difficult situation, and I don’t think they need your unhelpful critiques as they are trying to help their son be healthy!
Susan, thank you for jumping to my defense 🙂 I don’t think Jill was attacking me, just asking some questions. It is obviously impossible to get the full feel of things through my blog. There is plenty I don’t post…I could come on every morning and write about what a crappy night we had…for instance, last night Apollo was up every hour, talking, crying, yelling…but that would rather get old 🙂
And yes, we have been taking both a traditional and non-traditional approach to his health. He has been seeing both our family doctor and our naturopath since birth…
Jill- they are admitting him to avoid numerous different trips and procedures. He needs another bronchoscopy and to have his digestive system looked at by the GI doctors. Both of these require anesthesia- this way they can both be done at once. He also needs a sleep study, which would require a seperate trip and stay. And he needs a swallow study, which requires neither sedation nor an overnight stay, but once again a trip to Seattle and another procedure. All of these have been discussed post-surgery, the idea right now is just to get them all done at once to save him the trauma of multiple trips- and hopefully to find out what is still bothering him without dragging these visits out over several months.
As far as eating (and please know, I am not being snarky…it can be hard to read tone-of-voice over the internet) you are the second person to ask why we continue to force him to eat healthy foods…his diet is limited because of a milk allergy, but other than that, we let him eat anything he wants. I’m not quite sure how I give the impression that we only offer him healthy foods…in fact in the video he was eating a chopped up hot dog. I also pick him up french fries at McDonald’s several times a month when I am out running errands. He eats potato chips frequently. I posted about his love of Oreo cookies…Maybe in the pictures I’ve posted he’s been eating healthy foods? Believe me, he has the most unhealthy diet any of our children has had 🙂
I definitely think the testing is needed. From listening to his breathing, and watching him eat there is no way this can keep going in this way. he needs to have help. His breathing could be indicative of a problem far larger than anyone knows. He will not grow and become healthy when eating is so difficult, as Renee has mentioned he is burning more calories from how hard he works to eat, than he gains. Jill, he cannot grow an be healthy in this way. he could be currently malnourished from not being able to get enough, he needs nutrients that cannot be achieved from eating just what he is comfortable with, he may need a feeding tube for a time to get him to a healthy point. It isnt ok as a parent to watch your child struggle with no help. God has given us the brains that have been able to develop technology that can help Apollo. These tests, the hospital stay, is far better than just staying at home watching Apollo suffer and hoping for a solution. This family has been through so much, I think from this blog Renee is able to write down some of her stressers and from us, she needs prayer and support more than anything. Everyone makes the best decisions in the moment for their children, Chuck and Renee need help for Apollo. I cant imagine their stress and worry while they sit at home watching him struggle and trying to find a way to help their baby.
I’m so pleased you have some further steps of action to take! Of course it would be better to not need it, though. I know the relief of finally getting tests/investigations underway after hitting brickwalls, and our boy’s issues were nowhere near as constant as Apollo’s.
Susan, Wow! You assumed a lot in your post. I did not post any critiques of Renee at all and I don’t need your unhelpful critiques of my post, which is ironically what you accused me of doing to Renee. You posted, “hospitals do not do the tests often” and “doctor’s schedules are inconsistent on weekends”. Are you familiar with all hospitals and their testing procedures as you eluded too? Are you in the medical field? Because I AM and I can tell you doctor’s schedules are often times than not inconsistent during the week too. Depending on the hospital, the testing Renee mentioned is done on the weekend. I was referring to, why wait, as in why not get Apollo in now and get him checked out. Get some of the testing started now and record what is going on with him asap so he can get treatment. The doctor’s, in my experience, will not all meet at once. They will however, review everything from the hopsital stay. Susan, you made so many assumptions, I am trying to address them all. When I stated, done put him through any un needed testing, I was referring to the physicians. This absolutely DOES happen, again, in my EXPERIENCE. Un needed testing is done at times for numerous reasons, if you want clarification as to those reasons please let me know. How do you know what all of the physicians have agreed upon doing as far as testing, as you posted, if they haven’t all seen him yet and some of the testing has not been done to further evaluate and see if any other testing needs to be done–another assumption, this time of the physicians, on your part. Renee, I did not expect to be attacked for my comments, thank you for coming to my defense. I did ask about
Jill,
Apologies!! Internet communication is so hard!!
Sorry for offending you/jumping to conclusions. After reading your reply again I realize your tone was different then I “read” it the first time.
I just feel like (and this is not you, sorry again) internet commenters in general, seem to offer judgment about medical decisions that parents in difficult situations make. To me, this puts an additional level of stress on the family and I (though I don’t know this family except through the blog) was just defending them against that.
PS I am in the medical field and was speaking in generalities.
I’ve been following Apollo’s story for a while now and praying for him and your family. I worked for years as a pediatric nurse at Johns Hopkins Children’s Hospital in Baltimore and just wanted to pass along a few tips to make the most of out your hospital stay. First, make friends with your nurses and talk to them about any concerns you have, especially if you feel like the doctors aren’t clear with what they are telling you or aren’t hearing your concerns. They will be the ones who will be fighting on your behalf, helping form the links between the various doctors and insuring your voice is heard. They’ll be the ones up with you in the night listening to Apollo struggle to breathe and standing with you as you feed him. Nurses typically have the time to listen to the full story of what is going on so share it, even the smallest details. Nurses are often experts in taking the small details a parent shares about a child and finding the vital bits of information that doctors have missed because they didn’t have time to hear the whole story. Second, don’t assume the various teams of doctors seeing Apollo are communicating with each other. Ideally, they will be, but in reality, communication between disciplines can be difficult, as you’ve already seen. Write your questions down throughout the day so you’re prepared during rounds. Use the phrase, “I’m hearing you say …” and have the doctors confirm your interpretation of the findings. Again, ask your nurses questions, try to have them in the room during rounds so they can also hear what the doctors are saying and clarify things for you. Finally, wash your hands and have everyone else wash theirs before coming in contact with Apollo. So many kids come in the hospital for routine tests like and catch all kinds of infections while there. Don’t assume people are washing their hands before coming into the room-techs, nurses and doctors as a group aren’t that great about doing it.
Elizabeth- thank you for these tips!
oops, this sent before I was done. I was going to say, Renee, I did question his diet, but I even put, “this is not a criticism”. I only asked this because it appeared he is given “healthy” things. Where this is awesome, and I posted I admired this, he needs calories, from what you have said. Since he is burning so many calories eating, he should eat whatever he will. I say this too because I have seen many, many parents not want their sick child to have pop, or other “unhealthy” foods because they are trying to give them wise choices. The parents don’t fully process this and stop and think that their child is sick NOW and needs calories, liquids and whatever they will eat no matter what type of food. The parents aren’t meaning to not give them what they need, they think they are doing what is right because after all, who wants to see their child drink coke and eat french fries for breakfast…but, if that is all they have had to drink or eat in two days it is ok and is progress to have them have “junk” in their belly which has calories (and yes, junk contents) and some nutrients and it allows the digestion process to take place. My son was very, very underweight and our pediatrician had us put butter on everthing he ate. He had butter french fries, butter eggs, butter peanut butter, lol. Seriously, everything! It worked and his body grew and his breathing improved due to the growth. I couldn’t stop myself from thinking his heart was being clogged (which of course for a years time it wasn’t but it felt like that to me). It was what was best for his body in the long run AND it worked. Bottom line, I was just trying to help and get a better picture of some things. We are all in this world together so jumping on someone doesn’t make it a better world to live in. It just causes hurt feelings and wrongful assumptions Susan. Hope you get some answers Renee.
Jill, thanks for popping in to reply again. Now I can answer more of your questions specifically. The doctor did tell me that more of the routine things like swallow studies they don’t do on the weekends (I’m sure they would in an emergency, of course). She also specifically addressed my concern that the doctors weren’t communticating and said it would be easier for them to communicate if he was in the hospital. And she said that way they would be able to observe him sleeping…obviously a doctor isn’t going to be standing over his bed in the middle of the night, but the nurses will be there and they can be called in if necessary. As far as unneeded testing, we’ve actually run into the opposite of this…the doctors have been very hesitant to do any testing…we had to push and push for the MRI that finally found his double aortic arch and this was after waiting months for the bronchoscopy that missed it…At this point, for Apollo’s physcial and mental well-being, he needs the doctors to really look at him. And I believe doing it all at once will be much less traumatic for him..As far as eating, there really are no rules for Apollo (except for dairy free). Part of me hates it, but we were told unequivically that his airway will not improve until he grows-that’s quite some motivation. So, yes, french fries, Oreos, dark chocolate (it’s dairy free)…he eats peanut butter and almond butter right out of the jar. Anything goes for him.
Renee,
Praying for you guys. While I hate that you have to take Apollo back for a few days at the hospital, I’m relieved for you all that you will hopefully get some answers.
Wendy
Good luck today!!! I hope the tests and doctors can give you some answers for your little guy.
I just watched the videos…WOW I think it was great the dr could see that retraction when he eats. And the cough…bleck. And the wheezing in the second video (I think it’s wheezing?)..your poor kiddo! Bravo to the readers who suggested videoing him.
I have been reading your blog and following Apollo’s story over the last few days. I found it completely by chance as my 17 month old little boy has just been diagnosed with a vascular ring. This comes after a year of battling with doctors to try and take us seriously so completely understand your need to get some answers. Joseph was born at 32 weeks and was initially diagnosed with Laryngomalacia at 7 months but despite the ENT team saying it was unusual for it to come on at that age they still stuck to their diagnosis. In January of this year he had a Laryngoscopy and Bronchoscopy done and a Barium Swallow…it was on the Barium Swallow they found he had something called an Abberant Right SubClavian Artery but the ENT doctors still said they saw nothing when they looked down so it couldn’t be that causing his breathing issues. After much argueing they agreed to refer us to another doctor and he was seen last week at Great Ormond Street Hospital (we’re in the UK and it’s a famous childrens hospital over here) where they did an echo (for the first time!) and saw the Vascular Ring straight away. He then had to have a CT done and we are waiting on the more detailed results from that. I really hope you don’t mind me contacting you…I have searched all over and can find hardly any one who has experienced a Vascular Ring first hand so it seems we both have very special little boys! Hope all goes well with Apollo in the hospital and really hope we both find some answers soon.
Julie- thank you for commenting. Thank God you kept pushing, just like us…I am so glad you are finding my information useful. That is exactly why I blog about it…I wish I could read someone else’s first-hand account…but since I can’t, I share Apollo’s story. Crazy how we can be on different continents and STILL have the ENT’s miss this diagnosis. If you are on facebook, we have a very small group there: Double Aortic Arch & CHD Awareness Support Group. Our kids all have vascular rings. Can you tell me, does your son have feeding issues like Apollo does?
Yes I am on fb…I will have a look for it. Ive already “liked” your page…your video of the noises Apollo makes when he is asleep is exactly the noise that Joseph makes! I know it must sound odd but Im so glad he’s not the only one! Ive questioned myself so much this last year and even begin to wonder if I was imagining it all so Im very relieved that finally they are taking us seriously. Im not sure yet what type of Vascular Ring Joseph has…I don’t think it’s a Double Aortic Arch but a different type. Dr did say but it was a bit of a blur last week! Yes he does have feeding issues…possibly not to the extent that Apollo does though. He coughs and gags all the time while he is eating (and drinking which is awful to hear) and when he has the food in his mouth he very often can’t actually swallow it…very hard to explain but it’s like he can’t get it down. When he was tiny he would take literally hours to drink milk (he was tube fed in hospital as he was prem and then bottle fed) and then 2 mins later threw the whole lot back up. He’s 17 months and weighs just over 20lb so still tiny as well! x
Excellent work with the videos! And you are so good at advocating for your boy.
Elizabeth’s advice sounds good to me too. If, during the admission, you still feel that doctor A isn’t talking to B isn’t talking to C, you could request a “care conference” while in the hospital and specify who you think should be there (GI, pulmonology, etc.). That would be a meeting between you, doctors from the various specialties who are caring for Apollo, and anyone else relevant (occupational therapist, dietician, whoever). The chance to get everyone in the same room talking face to face once they’ve all seen him could be very valuable.
Feeling angry and impatient for you and I’m sure with you that this sweet boy is still struggling so much to do simple things like eating. Channeling it into the positive energy of prayer. You are wonderful parents to a wonderful and brave boy and this is going to get figured out! Hang in there. We are supporting you like crazy.
Good for you. Sometimes getting everyone coordinated is the key. I don’t remember, but if you haven’t had him tested for cystic fibrosis you may want to do that too.
CF was the first test they did, way back last summer.
Renee, I don’t have any words of encouragement for you as I am speechless reading your little son’s story. I do pray that God will give your medical staff and you and your family the wisdom to find out exactly what is going on and the strength necessary to deal with it. I admire your courage and commend you for staying on top of things. As I say, our little ones cannot do for themselves and that’s why they got parents. You are a great mother and warrior.
I do have two sons with special needs, a muscular degenerative disease, and the little one (27 months old) is going thru some feeding issues, although caused by other series of problems. He is a whooping 23 pounds. Currently hospitalized for 2 weeks now after acquiring hMVP, which caused a series of pneumonia, hyperventilation, adelectosys (sp?), lung collapsing, O2 desats, and almost caused him being put on a ventilator. He just does not care for food, rejects and gags sometimes just to look at it. He could be perfectly happy without food all day. The doctors think that if he had more pounds in him, he would be more apt to fight diseases, so they’re recommending a gtube, to which, I’m not opposed at this point.
I read your comment about using antihistamines to increase his appetite. Can you tell me a little bit about this?