Well, of course as soon as I wrote that last post Ike has petered out a bit. He's back on oxygen and is very, very lethargic. No one is as worried as I am. They say it's normal and it's really hard for these little dudes after being sedated for so long. I remember how exhausting it was trying to move around after I'd been on bedrest for so long, and how I thought I'd developed some kind of condition, or was reacting to a vaccine I had. My muscles and joints ached, I had a headache all the time, I was exhausted and irritable. Obviously, my bedrest and Ike's are completely different, but I can totally understand that he's pretty beat after a week. I get it intellectually, at least. Emotionally, it's freaking me out to see him just laying so still watching TV and barely tracking with his eyes.
He has a great couple of hours in the mornings and then he is just wrecked. Luckily, we have a "movie closet" and Nick Jr. and a PBS station that comes in nice and clear. (We're trying to broaden our horizons after watching Signing Time 6 million times.)
We just had some Complex Airway Fun Timez ™ wherein the RT came and stuck a suction catheter up his nose to tickle the back of his throat to get him to cough. Some barf and a bloody nose later he did cough up some junk, which was good, we were just hoping to not have to go to such extreme measures. Getting this kiddo to cough is tricky. He doesn't yet understand how to blow from his mouth, so the PT tricks of blowing bubbles or blowing a pinwheel aren't catching on. It helps if I can make him laugh, but he's not in much of a laughing mood, even with tickles.
After the Complex Airway Fun Timez ™, we rewarded him with a ride around the unit. (The mask is to keep him from catching anything funky hanging out in the hallway)
We are living large.
Haiku of the Day 
Loving the legwarmers! He is amazing!
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…and the cowboy shirt! he looks like a funny stagecoach robber!
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Oh my goodness, you guys must be thrashed! Hang in there – the end is in sight. Way to go mom and dad!
Keep these photos handy for those turbulent teen years when he exclaims “no one loves me!” Whip em out and say “feck you”! 😉
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Soooo cute! And NO TRACH!
And my 2c: remember he’s got actual surgical recovery to go through – the energy drain as his body uses a lot of its oomph just to heal – beside the drug leftovers, and that takes weeks before you start to feel remotely normal. If he’s got any energy for playing he’s definitely ahead of most adults at this stage…
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Ike is still my hero. Thinking of you guys, and sending you all the best!
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What you said about his not knowing how to blow from his mouth really made me pause. It must be so weird for him to not have the trach. He’d had it for so long, and had learned how to manipulate it and how to make noise through it, but now it’s just gone. For him it must be like one of us nose/mouth breathers trying to learn how to breathe through our eyeballs. He’s such an amazing guy!
Well, I hope with his detox behind him, you and your hubby might get a chance to put your feet up and relax a bit. Take care!
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Those legwarmerthingies totally rock! We’ll need some of those! 🙂
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He looks like he grew taller since the last time I saw him.
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Wow, stuff we never give a second thought to – blowing out and coughing. How about vocalizations at this point? He’ll get stronger, don’t worry much about that; think of what he’s conquered already! Hang in there y’all! I’m rooting for you.
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He’s been thru so much. And I second the comment about recovery from surgery. The drugs just stay lingering around and your body is trying to heal. A few hours a day of energy is good. Just think of his downtime as healing. He’s doing great. Hang in there. Keep positive.
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He’s been thru so much. And I second the comment about recovery from surgery. The drugs just stay lingering around and your body is trying to heal. A few hours a day of energy is good. Just think of his downtime as healing. He’s doing great. Hang in there. Keep positive.
He’s adorable.
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A year from now, when this is all behind you, you can comeback and read these comments and look at the pictures and finally breathe! Hopefully the worst is behind you. I can’t believe how tall he looks! Hang in there mom & dad, take it a day at a time. Sending you prayers and positive vibes!
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I’m getting worried because you haven’t posted in awhile. I hope everything is ok. Sending you prayers!
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