Apollo’s {Second} Feeding Evaluation

posted in: Apollo, Special Needs | 31

Another shot from Sunday.

Oh my goodness. Yesterday was CRAZY. Apollo was having trouble breathing all night, so I called right at 8 am to get an appointment take him in to see our doctor. They had an opening at 8:40…As I was driving to drop Adalia off at 8:15 to learn about milking cows, I realized there was no way I could get home, get him ready, and make it to the dr’s office on time. I called Tilly and asked her to get Apollo ready to go an anyone else she wanted out of the house (since she and Judah would be babysitting). I dropped off Adalia, drove home, took a passel ‘o kids and sped (literally) to the doctor’s office. And arrived just three minutes late. I was told Apollo’s lungs were clear (thank God!)…basically, the same old same old. He can’t breathe, his lungs are clear, good luck.

I returned home in time to take him to his feeding evaluation. After spending much thought and conversation about what to take for him to eat, I settled on: a banana, baby food, french fries and chicken nuggets. A friend convinced me to take something (chicken nuggets) a normal kid his age could eat, but that he couldn’t. So with much fear and  trembling, when the time came, I set him at a little table at the Children’s Neurodevelopmental Center and put french fries  and chicken nuggets in front of him. He dug in with gusto! And began to have trouble immediately. You could see him sucking in air around his neck and collar-bone as he tried to breathe and eat a nugget at the same time…he chewed, and swallowed just as you would expect, he just can’t breathe at the same time…he ate and ate and his breathing got louder an louder….finally I cut up the chicken nuggets (as we would normally do) and he ate that much better (but not without difficulty).

There I sat, faced with a speech therapist, a nutritionist and OT (or PT?) who were all shocked at how hard he had to work to eat. Unlike his feeding evaluation six months ago where I was told he was just “scared” to eat. I’ll save you the details, and say the consensus of all three was we need to consider “alternative feeding methods”…ie a feeding tube. All three said we’re doing everything right, therapy won’t help (because he’s chewing and swallowing just fine) and he’s probably burning way too many calories by the simple act of eating…

And once again I was struck by the sheer absurdity of the situation…not one of his myriad of doctors ever seen him eat…they just listen to me describe how hard it is for him and look at his lack of growth and frown. Specialists continue to look over the bits and pieces of Apollo, but rarely communicate with each other…Its like the fable of the blind men with the elephant…

Chuck and I are in full agreement that we want someone (NOT the ENT) to take a look and see why he still can’t eat…seems like a pretty reasonable next step, don’t you think?

Already today I’ve called the nurse at the pulmonology clinic in Seattle, called the Children’s Neurodevelopemental Center to have a report from yesterday faxed over to the them and fielded a call from the sleep specialist’s nurse…who, by the way, reported the sleep doctor wants me to increase the medicine Apollo is taking. I know he needs help sleeping, but I’m not sure what the idea is…keep giving him more and more drugs until he  at last drifts into a drug-induced sleep? I mean, he does need to sleep…

Oh, and after I returned home yesterday afternoon, I had less than an hour before I loaded all of the kids into the van, dropped them off at my parent’s house while Adalia and I attended a Running Start meeting. And then I rushed home and made dinner so the boys could go to Scouts…Chuck, bless him, arranged for the boys to have a ride so he could stay home and lend me a hand.

And now I’m tired.

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31 Responses

  1. I am so surprised and sorry to hear that therapy may not help with his eating. I truly hope you’ll be able to find a way to help him eat like any other little kid!

    • bakersdozenandapolloxiv

      Kate- never in million years did I think they would say that…I expected either to be written off or (hopefully) offered therapy…

  2. i I AM AN OCCUPATIONAL THERAPIST AND HAVING BEEN READING YOUR BLOG FOR A WHILE. I AM ALSO CONCERNED AT YOUR SON’S DIFFICULTIES IN EATING AND I WOULD SERIOUSLY CONSIDER WHAT THE 3 HAD TO DISCUSS WITH YOU REGARDING ALTERNATIVE CHOICES. I CAN SPEAK FROM THE MEDICAL PROFESSION AND STATE THAT AS A PARENT PLEASE CONTINUE TO BE VILIGANT, PERSISTENT, AND LOUD IF NEEDED TO GET YOURSELF HEARD AND TO HAVE HIS CARE AS HE NEEDS. WE OFTEN MINIMIZE THE PARENTS’ ANXIETY, AND AS A PARENT MYSELF, YOU ARE NOT OVERREACTING. HAVE THEY DISCUSSED WITH YOU A SOFT FOODS/SOFT TEXTURES DIET? LEARNING TO STOP AND DEEP BREATHE WHEN HE SITS DOWN TO EAT? HE MAY BE MECHANICALLY ABLE TO CHEW AND SWALLOW BUT OBVIOUSLY THERE MAY BE A PSYCHOLOGICAL COMPONENT AS WELL, BUT YOU ALREADY KNOW THIS. I WRITE B/C I AM FRUSTRATED FOR YOU WITH HIS CARE AND FEEL IT IN EVERYTHING THAT YOU WRITE.

    • bakersdozenandapolloxiv

      Yes, we discussed textures…he eats a LOT of baby food still, at 22 months, but while great for a baby, it doesn’t have much fat or calories for an active toddler. We won’t stop pushing until we have his problems solved, the problem is, I’m not a medical professional…If not for us, he wouldn’t even have been diagnosed with the double aortic arch…just so frustrated.

  3. I’m so sorry – I really do understand your pain and frustration. My five year old is currently in hospice nearing the end of his battle with a mitchondrial disease. I don’t have ANY reason AT ALL to think that this is Apollo’s problem and I’m not implying that this is the case. I’m just sharing that because our son wasn’t diagnosed until he was 2 and I understand the agony that the medical run around can cause!!

    I also wanted to share that a feeding tube doesn’t have to be a big deal at all and is certainly not a permanent thing. We had one put in our son (a surgical g-tube) when he was 9 months old. He had to start getting all of his nutrition via a central line starting at 12 months. He still has the g-tube but it is only used to drain bile and gastric juices as his entire GI system is shut down from the progressive nature of his disease. Again, I AM NOT implying that anything like this is going on with Apollo AT ALL. When our son finally started getting the nutrition he needed (again, in his case it was IV), he was transformed. He put on weight, he started hitting milestones, and even started to eat little bits! In his case, the food wasn’t absorbed, but since he’d had a huge oral aversion, the eating was a big deal. He figured out his own way around his swallowing issues, many other medical issues improved for a while, and he really just blossomed.

    A feeding tube is not difficult or scary to maintain or use. There is basically no infection risk and you could even feed him your own blenderized diet (there are tons of sites with recipes for balanced g-tube feeds). It doesn’t have to be permanent and is so often a bridge to get a child stronger and healthier while feeding issues are resolved.

    Of course you want to get to the real bottom of the problem and I applaud that. Don’t ever stop advocating for Apollo – you are doing a GREAT job. Please just consider the feeding tube as something to help him while you and your medical team find the source of the problem and work to fix it. Good, stress-free nutrition can only help him and a feeding tube doesn’t mean that you can’t work on solving the problem and weaning the feeds. Oh, and often the feeds can be done by a continuous pump overnight – feeding at night and fasting during the day instead of the other way around. That can help motivate him to keep working at things during the day when he might be a little hungry and thirsty. If a pump isn’t used, then feeds are put in using a huge syringe at mealtimes. It only takes a few minutes to do.

    If I can help, listen, answer questions, or serve you in any way, just email me. I’d be more than happy to help in any way. We’ve had various types of g-tubes for 5 years now, have used a feeding pump, and would be happy to answer any questions you might have about how this works in real life. (we are a “small large” homeschooling family with 8 children).

    Blessings,
    Kate

  4. I’ve been following your website, and I know the frustration your feeling, you really do need to be vigilant and keep pushing to find out exactly what’s wrong with Apollo, I was wondering if you’ve ever heard of the Cleveland Clinic, their internationally known they treat people from all over the world,and they handle alot of complex problems that other Drs and Hospitals are’nt able to, just a suggestion.

  5. I am glad that they finally got to SEE the issues Apollo is having… wish the doctors would see it too. Being an advocate is not a simple job… I pray for your strength as you fight for Apollo.

  6. It’s great that Apollo showed off his eating problems for the professionals! Now to figure out how to fix it…

  7. Hilltrain

    Just an idea. Do a little video of Apollo eating and play it for the doctors on a laptop (iphone? or other computer device :). Insist that they watch it. Seeing it themselves will go a LONG way to them “getting” it. You ARE doing a GREAT job advocating for Apollo!!!! Keep it up and make a LOUD noise that forces the “experts” to listen and search for solutions. Don’t settle for…but I know you won’t. 🙂 And YES, it’s exhausting….and will eventually be exhaustingly worth it.

    • Taking a video is a great idea. No doctor will ever care as much as you do. Keep searching until you find one who will listen. Have you ever added powdered veggies or protein powders in liquid form?

      • bakersdozenandapolloxiv

        MeLisa, unfortunately, Apollo won’t drink any liquids except for water or the juice we make (in our Champion Juicer).

  8. Sally was Apollo’s age when she got her feeding tube it made a huge difference for her she was finally able to get the nutrition she needed without Mom having to work for every bite

  9. I am sorry you did not get the news you were hoping for. I would hope that a feeding tube could be a short term solution to help hi grow, while you work to solve his long-term eating issues. I know more than one child who was on a feeding tube, but eventually was bale to be taken off of it as they learned to eat enough to grow.

  10. I’m so sorry that your sweet Apollo is still struggling. I pray for him often. You are doing everything you can for him. I also pray that God will give you and Chuck strength as you continue to navigate through this. I wanted to share a bit of my story. I am certain that you are SOOO tired of people offering medical advice or options, but since my family’s diagnosis, I have felt called to inform as many people as possible.

    I have had significant health problems for 5 years. In the midst of those 5 years, I somehow managed to grow and deliver two healthy babies. However, like yourself, I was riddled with nausea and vomiting THE WHOLE TIME. Many other unpleasant symptoms accompanied the nausea for the whole 9 months. Knowing that your pregnancies were like mine is why I feel the need to pass on this info. My symptoms did not completely go away after my pregnancies. I got worse and worse until I started to wonder if I would live to meet 30. I was diagnosed with Fibromyalgia and Lupus.

    Then a friend contacted me and told me about Lyme disease. She encouraged me to watch a great documentary called “Under Our Skin.” I watched it immediately and then got tested correctly for Lyme disease (the standard test is not accurate). I tested as a strong positive along with two other tick borne illnesses. What I learned upon diagnosis is that Lyme is transmitted sexually and also crosses the placenta during pregnancy. Both of my children have tested positive. It explains a lot of the health problems my son has had since birth. We are all now in treatment.

    Again, please know that this comes from the part of my heart that desperately wants an answer for you and Apollo. If you roll your eyes at this info, I can’t blame you. I did the same thing the first time someone suggested Lyme to me! However, if you’d like to know more here is a good website with a long list of symptoms: http://www.canlyme.com/patsymptoms.html. Check out the list, especially the respiratory symptoms. If you do decide to have Apollo/yourself tested, please contact me. There is a Lyme specialist in our area. A regular doctor won’t know enough about Lyme to get you/him tested correctly.

    Will continue to pray…..

  11. It sounds like it is time for you to start looking for other options. It is hard to hear that because everyone wants their child to be “normal”, feeding tubes are minimal and often for short term use.

    There are twin girls in my area that were once conjoined twins, they have been separated and 1 of the girls is unbelievable “picky” about eating and has had a feeding tube since the separation.

    I’m not saying Apollo is picky, I am saying that feeding tubes help kids get the nutrition they need so they can grow. It is vital for him to start having more nutrition, he sounds like a smart kid but he could be lacking nutrients for his brain. Kids learn the majority of their life skills before they are 5.

  12. cecily spencer

    has anyone suggested a sleep study or using a cpac. Maybe his airway is continuing to cause the sleep disturbance. I loved the video tape him eating comment. great idea. Hang in there. He’s got the right parents on the job for him.

    • bakersdozenandapolloxiv

      Cecily, we discussed it with the sleep specialist, but only to rule it out. He has no symptoms of sleep apnea and a cpap machine still wouldn’t help because his trachea is narrowed and it would just be forcefully pushing air into a too-small space.

  13. I’m tired just reading what you’re going through – keep up the good advocacy for him; he couldn’t have better parents for the job!

  14. Lindsay Diffee

    Popping into your blog to check on sweet Apollo. Just wanted to say… for what it’s worth – from someone who’s a total stranger but who also has a complicated kid with some special needs – it sounds like you’re doing such a fabulous job for Apollo. I know you must be so frustrated by everything that hasn’t been solved yet, and by how much trouble you’ve had to go through to get things done, but I really admire your strength and ability to roll with the punches. I’m sure it doesn’t always feel like you’re doing that, but you definitely are. I think having to do things that are normally outside your comfort zone (giving him sleeping meds, etc.) for your child deserves special commendation. I know I felt like the worst mom ever for putting my 2 month old baby on Prilosec and using several additives to thicken his feeds when people kept telling me he didn’t really need it, etc. – but I did what I thought was best and it WAS what was best! If sleeping medicine will help, if a feeding tube will help… I know you will do whatever you have to do. (Not saying you will have to do feeding tube – just an example). Apollo is lucky to have such a strong mommy! 🙂 Oh, and I’m sure you may get tired of hearing this, as I do on occasion, but I really do believe God will use Apollo’s struggles for his glory and make your whole family stronger and more blessed because of them. (Now if you could only get them solved and enjoy some “immediate” relief.) *HUGS*

    • bakersdozenandapolloxiv

      Thank you Lindsay, it is always great to hear from a mom who’s been through this! Yes, I hate drugging my toddler for sleep, but it is what it is right now…how is you little guy doing?

  15. Ok, so you put him on the feeding tube as suggested by the specialists(which might be great for the short term as he needs the nutrition to grow)…now what? Now what do they suggest? Seems they need to have a plan beyond a feeding tube since he is quite obviously having issues eating and breathing. Is it a muscular issue in his swallow/gag reflex? Can he not breath out of his nose? Which of course is where you and I breath from while chewing. Does he need to learn how to breath properly…I know that might sound stupid but with all his problems could his body not know how to properly and effective breath? And while eating no less which for him might just be to much. My youngest see a speech therapist and one of the things they work on is breathing because he gets what we call bumpy speech because he’s taking shorter breaths and then has to take another breath to finish. He’s physically healthy (low muscles tone which is part of what they attribute this to) and does not have general breathing problems so if he has a hard time regulating his breathing when he’s speaking (especially when he’s excited) then I figure maybe your little guys body just doesn’t know how to effectively breath. And if he’s hungry and digs in with gusto that could make it even harder. Again, I could be way off base but I wanted to throw it out there. Raising kids is much harder than I ever imagined!!

    • bakersdozenandapolloxiv

      Kris, as always, thank you for your input. I am always open to thoughts/suggestions. It was, afterall, a blog reader who first suggested a double aortic arch! First of all, keep in mind these were people doing a feeding evaluation, no doctor has ever suggested a feeding tube. I am awaiting a call back from Apollo’s pulmonologist (at the moment his most important doctor). We would only agree to a feeding tube if, a) we were told he had a very specific problem preventing him from eating properly, or b) it is going to be a year or two before the situation is resolved and it is a way to nourish him while he grows and heals. Unfortunately breathing through his nose (which he can do) doesn’t help him get air through his damaged trachea…according to the pulmonologist he needs to GROW for his trachea to GROW. It’s the pulmonologist who has described his airway as “breathing through a straw”. My gut feeling is that now that the vascular ring is gone, the food going into his esophogus is now compressing a soft spot in his trachea…I could be wrong but I think it is a probable scenario.

      • Ahh, ok I missed that his airway is still so small. I hope you can connect with his pulmo dr ASAP to get some more answers. Dealing with different doctors and specialists and trying to keep all the information moving in a forward direction can be so frustrating. Continued prayers for all of you that things keep moving towards Apollo’s full recovery.

  16. You know, I was told by a doctor that a newborn can breathe/suck at the same time. so nursing or a bottle, sucking a paci etc. I have never researched this, I do not remember what question I asked that prompted this answer. My son was such a poor nurser I ended up pumping/giving a bottle. That had nothing to do with breathing but at any rate, I wonder if Apollo never did breathe/suck at the same time? If he didnt, maybe that has something to do with his breathing while eating issues. I am not at all a medical professional, I am just an insomniac and Apollo came to mind as I lay awake thinking last night. I think a feeding tube is a good idea, the night time feed would be great to encourage him to eat during the day. I agree with a previous commenter-maybe it will help him get stronger initially. You guys have to be exhausted and stressed, still praying for you all.

  17. I wonder if his sleep problems and eating problems are related? As in…he’s an active boy who is not getting enough nutrition…so he wakes and he’s hungry, but eating is hard…and its just a circle of badness. I guess what I’m saying is that with a g-tube he may finally get enough nutrition to both grow and sleep.

    Poor, poor kid.

    • bakersdozenandapolloxiv

      The pulmonologist thinks he is burning too many calories breathing, because his little body has to work so hard…then add to that the fact that he has a hard time eating at all, and it is just a mess! He nurses 1-3 times at night still…

  18. They will give him a high calorie formula via G or NG-tube, if he can swallow liquids, why not just give him the high calorie shakes to drink? My daughter had first an NG, then G-tube, and when she was able to drank the formula/shakes directly. I personally would start there before placing a tube. We also had to use thick-it originally as she aspirated, which is also an option if needed.

    • bakersdozenandapolloxiv

      L- as I mentioned to another commenter, these people were just doing the feeding evaluation, no doctor has ever mentioned “alernative feeding methods”. I am currently awaiting a call back from Apollo’s pulmonologist to see what he thinks of the report. An NG tube is out, because he alreay has airway issues. We would only go a feeding tube route if a) we knew it was going to be a year or two until his breathing and eating improved or b) they could find the physical reason for him not being able to eat. And IF we had to go that route, he would be getting nutritious food in the tube, NOT formula. We have tried to get him to drink a high-calorie supplemental formula (which is what the doctors want). We have tried it: hot, cold, in cup, bottle, sippy cup, in smoothies, with Hersey’s syrup. He will only drink water and sometimes the fresh vegetable juice we make.

  19. I don’t blame him for hating that formula 😉 Knowing what I know now, I’d have made for my daughter a “formula” and pureed home-made high calorie whole foods. I wasn’t suggesting that you were doing anything as far as feeding tube, just that it wouldn’t be where I’d start. Good luck.

    • bakersdozenandapolloxiv

      Yes…it’s all so crazy. And since he’s senstive or allergic to milke (not sure which) he has to have some nasty-who-knows-what’s-in-it formula anyway. Seriously, on the can they gave me, I only recognized one ingredient, and that was corn syrup solids. So no, I would’t be putting that in a tube!

  20. […] breathing. This is the same team that evaluated Apollo last year and the same team that was so impressed (?) with his struggle to eat. So much so that they came out to video him so they could share it and present his case at their […]

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