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Apollo Update {Pulmonologist 1/13}

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Yesterday we headed out for yet another appointment at Seattle Children’s Hospital. Because the hospital is a hundred miles from our house, we have to leave early to account for traffic, etc, so we often arrive early. And arriving early often means a trip to one of the hospital’s two Starbucks.

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While Apollo nibbled oh-so-slowly on a cake pop he regaled us with an animated tale of climbing up on the ceiling…012213_9361 blog

…and then falling down…

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…and how Daddy would catch him and he would be safe.   012213_9365 blog

While we waited Apollo asked  Daddy to  take him to see “Monkey Mouse”.storyboard001 copy

I cannot believe how big Apollo is getting! He’s gone from being stripped naked and lying on the baby scale, to being too scared to stand on the big scale alone, to doing it like an old pro! And he’s growing…growing, growing, growing.012213_9373 blogPulse ox? That’s old hat too.

And now to the nitty-gritty of our visit.

But let me preface it with this: Apollo will never have a “normal” trachea or airway. He won’t have a “normal” airway because it didn’t develop normally in the first place. As a fetus, when his heart formed, his double aortic arch wrapped around his developing trachea, therefore his trachea has never been “normal”.

With that out of the way, let me say that Apollo’s pulmonologist, Dr. R, was thrilled with his breathing yesterday! The good news is he is much better since his re-operation at Texas Children’s Hospital. Dr. M, really did perform the miracle we were hoping for.

Here in an excerpt I wrote from his visit that day. The entire, detailed entry, is here.

“This time, unfortunately, he was not happy. He said he heard a lot of noise still when Apollo breathes it and it is not what he expects to hear post-double aortic arch division. He kept mentioning the possibility of an underdeveloped airway. Not at all what we want to hear…. He most emphatically told us he  thinks we should seek a re-operation for Apollo in another state. “Don’t mess around with this. This kid’s had enough things that are screwy with his case already. Find someone who knows how to fix it and have it done sooner rather than later”.

Quite a change from what we heard yesterday! Dr. R wasn’t thrilled that he does still retract when he breathes and it is visible from across the room- in part because Apollo is so thin. He also said that he still has a really long inspiratory phase when he breathes, but he is so much better than before the re-operation!

We asked what we could expect in the future. Unfortunately, there is no way to predict which kids have on-going airway issues that affect their daily lives, and those who recover so well they aren’t affected. He said he is “very hopeful” that Apollo’s airway will grow and develop. When he is five or six they will start doing lung function tests (he is too young for them now).  For now, we keep him healthy and keep him growing.

As far as the g-tube, his pulmonlogist said he will need caloric supplementation for long time. Very likely longer than he even needs the g-tube. The thing is, when a person has to work hard to breathe, they burn extra calories. Therefore, eating what a healthy two-year old would eat, isn’t enough for Apollo to grow.

Yesterday’s visit gave us the best news we’ve ever had about Apollo’s breathing. He is healthier and doing better than he even has in his life. In fact, he currently has no appointments scheduled at Seattle Children’s hospital. None.

Thank you so much for your prayers and support as we continue this journey.

 

15 Comments

  1. Melissa Knox-Raab

    I can see Apollo growing. I’ve been following this blog for a few months, but in these photos, he looks bigger–much bigger. That in itself is a good sign. He sure is a fighter, and I am delighted that things are looking good. Love that chocolate smile, too.

  2. Mary

    What good news, Renee. Your choice of Texas Children’s was such a blessing ! Your pulmonologist has also really been such an encouragement and support for you and Chuck. I am so blessed to see Apollo improving, putting on weight and being such a feisty, smart little boy. He will continue to occupy his space on my refrigerator door. Even my husband checks your blog to see if there is an update that I’ve missed. We have 31 grandchildren and 16 great grandchildren, so far, and Apollo gets a very large share of our prayers. May God bless and strengthen you, Chuck and your whole family.

    • Bernadette Lock

      I am sure Renee feels blessed to have such a lovely lady praying for Apollo and keeping her family close in their thoughts. What a wonderful encouragement posts like yours must of been during some really hard times. Your such a lovely lady Mary, god bless you and your family.

  3. Michele

    This post made me cry with relief for you! Such a long road you have walked, I am sure it feels good to get positive news for a change! Rejoicing with you and praising God for Apollo’s healing!

  4. Judy Small

    Best.news.ever!!!

    A couple phrases caught my attention: “Dr. M, really did perform the miracle we were hoping for.” And your whole last paragraph: “Yesterday’s visit gave us the best news we’ve ever had about Apollo’s breathing. He is healthier and doing better than he even has in his life. In fact, he currently has no appointments scheduled at Seattle Children’s hospital. None.”

    You’ve been fighting and enduring so much for so long. God has proven Himself faithful and brought you this far in the journey. I’m sooooo happy for you all!!!

  5. kris

    Wonderful news! And it’s so good to see all these healthy happy pictures of Apollo. Looks like his true spirit is finally able to shine through now that his health is improving.

  6. Victoria

    Awesome news! This has really made my day 🙂 It is so good to read, and I can feel the relief in your words. I will continue to remember Apollo in my prayers, and pray particularly for ongoing visible improvement month on month and year on year as he grows, and for God’s rich blessing and protection as you work to “keep him healthy, and keep him growing”.

    Much love, and God bless, Victoria xx

  7. Tonymasons

    Such great news. Does Apollo now understand why he had to go through all those tests and operations, or is it still a little confusing to him? Does he see the benefit himself?

    Oh, and I’m probably the only one who doesn’t like that fish lens!!!

    • bakersdozenandapolloxiv

      Tony- We try to talk to him about how “Dr. M fixed your throat so now you can eat”. I believe he is starting to get it, though he has said, “but it HURT when they cut me open”. I didn’t chose the fish-eye in those photos for stylistic reasons- it was the only lens I have that would capture the scene without me being halfway across the room. My next lens will probably be a 35mm which will mean I won’t have to resort to my fish-eye in close spaces.

  8. Chris

    Fantastic! I’m so glad to hear that Apollo’s pulmonologist was happy about his breathing.

    The photos of Apollo waving his cake pop around are so cute.

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