Eat Sleep Breathe Repeat

sleep apnea toddler, obstructive sleep apnea

Sleep Eat Breathe Repeat. That’s the life of a baby, right? Unfortunately, those three things have been a struggle for Apollo since he was born.

The results of Apollo’s sleep study are in. Despite the fact that he did very little snoring and none of the snoring and gasping that he displayed in the videos I posted, he did show significant obstructive sleep apnea.

During this last sleep study in November 2013, he had ZERO instances of sleep apnea during the night. I cannot even begin to tell you how frustrating this is since even then we could see and hear him stop breathing. This time he had nearly fifty incidents of apnea during the night and this was without the loud snoring present. He was clearly hyperextending his neck to open his airway and his “sleep was fragmented and is most likely from the sleep-disordered breathing“.

I hate  the way I make that sound like good news. I only consider it “good news” because the doctors can finally see what we have been describing. There was no question  in our minds about whether or not he has sleep apnea, we just needed the doctors to see it. When the sleep specialist called me to go over the results she said several times, “I am so glad you called and got him an appointment. He really needed to be seen for this“.

Apollo sees his ENT July first. Back in November, after seeing a video of Apollo napping, the ENT ordered a sleep study and said, “Assuming this shows sleep apnea we will take out his tonsils and do a bronchoscopy at the same time” the only thing is, he had ZERO apnea the night of that sleep study…something I still don’t understand. So, I assume the ENT will schedule Apollo for a tonsilectomy and bronchoscopy.

sleep apnea toddler, obstructive sleep apnea

sleep apnea toddler, obstructive sleep apnea sleep apnea toddler, obstructive sleep apnea

As far as feeding and weight goes, Apollo’s g-tube wean attempt was an utter failure and he is just now (four months later) back up to the weight he was before the wean attempt. The good news is, with increased calories he is gaining weight. The bad news is, he still needs those extra calories. But, I suppose that’s not such bad new. He is growing and learning to eat new foods. Recently he has learned to eat cookies and a  few bites of sandwich. For some reason he has never tolerated any type of bread or baked product.

So it goes. We see him improve at a snail’s pace. The only way we can see growth is to look back six months or a year, but at least the growth is there.

{In other news, a few of you have noticed the new header and name. I  am planning to change the name of the blog to: Little Earthling Blog. I want a connection between this and my business Little Earthling Photography, but also want to keep the spaces separate. Once again, content here will remain the same, only the name is changing}

 

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11 thoughts on “Eat Sleep Breathe Repeat”

  1. Renee, I don’t even presume to come close to knowing how Apollo feels but I have scar tissue in my esophagus that builds up and I have to have it scoped and scraped once a year. When it’s at its worst, swallowing becomes difficult and painful. Bread, apples, meat, raw veggies, etc… are horrid and cause extreme pain and cause me to not want to eat. Two nights ago I actually had a significant choking episode while trying to eat dinner. Thankfully I could still get air but I couldn’t even drink water because it couldn’t get passed the lodged food. It took nearly 20 minutes to get it down and at the time I was home alone with 2 small children. I wonder if it hurts Apollo to eat. I am so thrilled you will be getting relief for his apnea though!!

    1. bakersdozenandapolloxiv

      Thank you for your input! It is definitely helpful to hear from adults who can put the experience into words.

  2. Relief from sleep apnea is huge all by itself. If your body can properly rest, that is a good thing. Before my apnea was treated, I couldn’t drive down to Everett without falling asleep at the wheel and was ALWAYS tired with no energy. God bless your entire family including precious Apollo:)

  3. I have sleep apnea and want to echo the huge impact it can have for a person who isn’t getting enough sleep to get the apnea treated. There are so many cascading bad effects of sleep apnea and cascading good effects of getting enough sleep, possibly including being able to grow better.

    1. bakersdozenandapolloxiv

      Thanks, Christine. I think this affects his eating too. He gets too tired to eat adequately, and he burns extra calories just trying to breathe at night.

  4. I’m glad that you got the answers you needed. That must have so scary to know he wasn’t breathing at times. Not to mention how tired apnea must have left him.

    We went for about 8 months without using a nutritional supplement (PediaSmart) hoping that after our daughter had rocketed up the chart (to an amazing 20%) that she would be able to sustain. She has now crept back up to the 5th percentile after falling off it again :(. And we’ve restarted the supplement. I have long suspected some of her gross motor delay is impacted by inadequate nutrition.

    It does feel like a big step backwards, but I’m trying to focus on the idea of providing what she needs “now” rather than progress and regression. All this nutrition stuff feels so demoralizing as a parent a lot of the time. It feels like being able to feed your child adequately is the most basic of parenting tasks, and yet often feels like an uphill battle.

    1. bakersdozenandapolloxiv

      Exactly, Samantha. I have to remind myself he is growing with the formula and *that’s* what is important. He, for whatever reason, simply cannot grow without the extra calories through the tube. And to not be able to feed your child is unspeakably difficult. I never gave it a thought with my other kids. I just fed them.

      I wish we lived closer so we could meet up for coffee…

  5. I totally understand the need for answers. If the doctors finally see what you’re dealing with and can give you a diagnosis than at least you have a next step. Even if what they are telling you is not great news, at least you have a next step now. My oldest has had a migraine since October of 2009. Notice I said “a migraine” and not “migraines”. It’s the very same one that has never ever ever gone away. Multiple specialists have seen her and have no idea why this is happening. The best they can do is try and treat the symptoms but not figure out the cause. This is the same girl who spent 5 days in the hospital last year with kidney problems that they originally thought was no big deal. Now she’s having problems again and it feels like we’re right back at the beginning where the doctors won’t listen. I feel your frustration with the medical profession!

    1. bakersdozenandapolloxiv

      Jodee- I cannot imagine how your poor daughter survived so long with a migraine! That’s horrible

  6. it IS good news to have answers. Especially answers like sleep apnea when things could be SOOOO much worse, I think. I have been hoping for a sleep apnea dx for one of my kids instead of the other things they are telling me might be wrong. IN the meantime, we are waiting 2 years with no clear dx… 🙁

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