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Best and Worst Wednesday {The Pulmonology Edition}

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Chuck (40) and Apollo (16 months)

Best part of our visit to see the pulmonologist at Seattle Children's Hospital?

    The doctor is ordering a bronchoscopy! 

    After six months of relfux medicine his stridor is cleared up (except for when he eats solid food), his voice is back to normal (so presumably his voice box and esophogus have been healed of the damage the relfuxed caused). And he said the bronchoscopy needs be done "sooner rather than later" but isn't an emergency.

Worst part?

    He still works too hard to breath, retracts even when resting (it was visible while he was just sitting on my lap) and burns too many calories breathing. The doctor once again said his trachea is narrowed and it's equivalent to breathing through a straw. 

Best part about Apollo's weight?

    He's gained two pounds in the last four months and is back on the growth chart for the first time in 8 months! He is now in the 7th percentile. Last time he saw the pulmonologist he was in the .05 percent.

Worst part?

    The thought of continuing the feeding struggles for another week/month/months is daunting. It is a full time job trying to get enough food into him for him not to be hungry. It's even worse  trying to get enough food into him for him to grow. The pulmonologist said if it weren't for the high fat diet and our effort, he probably wouldn't be growing. AT. ALL. 

Most Ironic part?     

    The pulmonologist is referring Apollo back to the ENT he saw in May to do the bronchoscopy. He said he could do the bronchoscopy, but he can't do the surgery to fix the problem. The ENT can do the bronchoscopy AND do the surgery to fix the problem. Hopefully this "referring" doesn't add too much time onto the whole process.

Best part about last night? 

    Apollo was only up once!

Worst part?

    It's because he gorged himself on french fries and chicken nuggets on our way home from the hospital. Being confined to his carseat meant he could eat, slowly and had nothing else to do. So he ate for an hour and then slept a five hour stretch before he woke up hungry. 

    Fries and nuggets are obviously not an option for every night, so we continue to search for some elusive high fat food that he will actually eat before bed. 

Feel free to join our Best and Worst Wednesday. No need to focus on pulmonology, any topic will do 🙂 If your post on your blog, please link back to me here so we can all be together. If you don't have a blog, feel free to add your best and worst to the comments.

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15 Comments

  1. kris

    Yay for all of you that things are moving forward! And don’t think of fries and nuggets as the worst part (for now). You totally keep him on a healthy diet and if some non healthy stuff will help for the moment then so be it. Hopefully once he gets the surgery he’ll gobble up everything you put in front of him. Bravo to your hard work paying off and A gaining some weight. Whenever I read your posts about his struggles it just breaks my heart. Good Luck!!

  2. Vicky

    What about a homemade smoothie before bed? Would that be easier for Apollo to swallow? You could throw all sorts of fattening, but healthy stuff in there.
    One of the blogs I read is from a family with a couple kids that are on a mainly thickened-liquid diet (one is dairy-free). Here’s a post where she talks about what she puts in their smoothies: http://cornishadoptionjourney.blogspot.com/2011/10/little-helps.html Scroll down about 2/3 of the way through the post.
    Sorry if you’ve mentioned whether or not smoothies would work in a previous post… But it came to mind as I was reading.
    Glad you’re moving forward… hope you get some long-term solutions soon!

  3. Avital

    Does Apollo like macadamia nuts? Or macadamia nut butter? No cholesterol, super high in mono saturated fat (like olive oil is) they are high in protein and fibre – they’re the super-heros of all the nuts. There are 960 calories in one cup of them. It can be a bit of a challenge to find unsalted ones, but not impossible – bulk sections of certain stores have them.

  4. Peg

    Renee, let him use a french fry as a ‘spoon’ to eat guacamole. Just kidding. But it seems as if you all have taken another step forward and that is good news indeed.

  5. Kristen

    So glad that more answers are on the way. Hoping that the procedure is scheduled rapidly for Apollo. Also, cheers to Chuck, who is looking very fit! I’m guessing he’s still succeeding with his juice/exercise routine?

  6. Kimberly

    I’m so glad the doctor is moving forward (finally)!! I hope things happen quickly for you. And yay for him sleeping well! Fries and nuggets are a good treat for anyone from time to time. 😉

  7. Elizabeth

    With their heads tilted like that Apollo looks like a mini me of your husband. I’m glad you both we able to go to this appointment and that even though you don’t seem to have an official answer to the problem you’re still moving toward one. So sorry for the way poor Apollo has to fight to eat. With thanksgiving tomorrow and looking forward to lots of yummy foods I know I would hate having it be uncomfortable and exhausting to eat.

  8. Heidi Wilson

    YAY for some answers – hoping and praying that it won’t be long now before everything is all done! Will look forward to updates in the future!
    Also, I see what you mean about Chuck losing weight!! My gosh – he looks GREAT!!

  9. Stephanie

    Well, it seems you may have found one way … just drive around for an hour every night with nothing for him to do but eat. Okay, maybe not a realistic answer. Good luck. I hope you find answers and a solution.

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