Emmy live blog fail!

Oops. I totally, completely, utterly forgot about the Emmy's (or is it Emmys?)! That, maybe more than anything, shows how wide-eyed and distracted I am these days.

And this is the year Friday Night Lights actually got nominations. Blast!

It is also the year I actually know a real live person who got nominated (shout out to Charles!).

Jimmy Fallon is tipping a 40 to Law & Order right now and that makes me laugh. Maybe I'll just start liveblogging late.

8:32 – Hey! Kyra Sedgwick! I love the Closer. But I am not so much loving her hair that looks like she swam for 16 hours in an over chlorinated pool, slept in a wet french braid and then unbraided it just.in.time. for the show.

8:34 – Also, I am little freaked out by Tina Fey's hair, too, in case you were wondering.

8:45 – I'm not into it, you guys. It's a weird feeling. I'd really rather watch True Blood right now. Plus, Ike is asleep upstairs in our room by himself and I find I have to keep running up there every few minutes to check on him.

8:47 – Everyone looks snarly in their smiling tonight. Very snarly. Maybe it's the fake white teeth and the lighting. Maybe Ricky Gervais is a werewolf.

8:49 – the problem is that if I watch true Blood, I can't pause the show because our DVD player SUCKS ASS. This means I'll miss a lot every time I run upstairs to check on Ike. So, it is the (SHITTY) dvd player's fault that I am apathetically watching Bucky Gunts get an Emmy right now.

8:52 – Maybe I'll just liveblog what I'm thinking right now. 1) Maybe I should get cable for football season 2) The carpet in this room is so disgusting I want to puke on it to improve it 3) Maybe I should get cable so I can watch the Daily Show 4) I need more bookshelves 5) I have no money 6) I just spelled that "meny" at first 7) I wonder if Ike will sleep in his bed longer than 3 hours tonight? 8) I don't really care about 7 because I like snuggling with him 9) This Martin Scorcese Boardwalk Empire show looks pretty cool

9:02 – If I didn't color my hair, George Vlooney and I would HAVE THE SAME HAIR.

9:03 – Clooney, not Vlooney. I don't know who George Vlooney is. Maybe an alien from Vearth?

9:07 – January Jones looks like she's about 19. Is she really that young? Maybe she's a little bit stoned. Does being stoned make you look young? (must look into this)

9:14 – Claire Danes is all grown up! This shouldn't surprise me, because we're the same age. But it still surprises me.

9:15 – Shit, I just looked it up. I am actually older than Claire Danes by 3 years. Now I'm REALLY old, if she's all grown up.

9:17 – I think maybe Jewel has been sucking some helium. It's not nice of me to say that, is it?

9:19 – Hey! Speaking of Gumby, we drove through Cumby, TX on Friday. It made me giggle. Who knew Gumby had a Texas town named after his porn star name?

9:21 – I can't believe I'm not waiting for our night nurse to get here right now.

9:27 – There's a hollywood hot chick sitting next to Jack Kevorkian. Date? Just lucky? I wondering if she is just tweeting the shit out this night?

9:29 – Oh, gosh, watching Claire Danes win an Emmy is like watching a good friend win. So many hours watching My So Called Life…

9:34 – I will admit, though, that even watching Claire Danes win an Emmy doesn't make me stop wishing I could just turn the TV off and read Mockingjay. Might as well stick it out, though. It's over at 10, right?

9:35 – Who AM I?

9:38 – Al Pacino looks like a yard gnome dressed in an all-fitting tux. What up, Al? Is he shrinking or what?

9:42 – I feel like I should be eating something right now. 

9:45 – Do people really refer to their beers as "MGD64s"? For real?

9:49 – I think I might see a nipple. And it is not mine.

9:52 – Maybe I should start watching Mad Men. I tried, couldn't do it. but I'll try again. They just keep winning, dammit. Do I keep fighting it? Is Mad Men the new Borg? Does making that reference explain why it's not my kind of show?

9:57 – And while I'm a little upset to not be able to ogle Tina Fey's weird hair once again, i will say, I'm really happy to see Modern Family win for best comedy series. It's a great show, when I remember to watch it. (Must pay closer attention to the TiVo)

10:00 – Now I read my book and eat a snack! Sorry this was so painful. I'll do better next time. Pinkie swear.

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You are now entering a parallel universe…

Everything looks the same, everyone looks the same, the dog is still cute but annoying, AND YET…

Everything is different. No super loud suction pump going off all the time. No super loud air compressor. No need to keep Ike's clothes and towels and blankets all downstairs. No need for Ike to sleep downstairs anymore. No HMEs, no saline bullets. No nebs. Only reflux meds.

Suddenly, there are three kids laughing all the time. Who knew that every time Ike was smiling, he was also laughing? I could have guessed, but never knew until now.

Yesterday, the whole family – all together, with no nurse! – went to Ikea. We bought Ike his own bed (to go in the master bedroom because we've suddenly realized we're a room short, and also because I can't let him out of my sight yet. I've still been attaching the pulse ox to his toe at night, to monitor his oxygen levels, but he hasn't dropped under 99 since he was released from the hospital, so I should probably put it away.)

Our big treat this morning is that Ike-a-saurus is walking again. He's pretty wobbly, but as I write this, he's standing on the kids little trampoline in the playroom, laughing like a mad man while the wee-er one hits him with balloons.

The wee one and the wee-er one aren't sure what to make of all this. When we got home the wee one cried. He said it was all overwhelming and he didn't know what to think or feel. He said he was scared and didn't want everything to change. But then we talked about all the things that would be changing (specifically, a time in the future when Ike and the wee one may share a room – and a bunk bed) and he started to feel better. I think the kids were surprised by the scars on Ike's neck and chest – and they were scared by them. I didn't do a good job of preparing them for that, I honestly just didn't even think it would be a big deal. That was dumb of me. The wee one was really freaked out. He actually was nauseated for a few minutes.

Now, though, they seem OK. Obviously, it will take us all a while to process everything, and we still have challenges to come. We will have to take Ike back to Dr. Fancy Pants in a month, and then three months after that, and then six months after that, and so on. We are under instruction to have Ike airlifted to Cincy if something goes awry. His airway will always be smaller than typical, and contact sports are probably a no go. There's a high likelihood he will need oxygen support when he's sick, because of some scarring in his lungs (attributable to the illnesses he had while trached, and to being a preemie). We will still have to be extremely vigilant about germs, especially during RSV and flu season. Things can still get perilous pretty fast, but I can't be thinking about that all the time. I can't dwell on it. We have to celebrate being trach-free, and enjoy every day.

So many little things are new again – hearing Ike laugh (we'd only heard him laugh once, in his sleep, before he was trached), being able to give him a bath in lots of water, buying a sand table, planning vacations where we don't have to contact medical supply companies, turning all the lights off downstairs at night because no one has to be down there, scheduling doctor appointments whenever we like because we don't have to worry about our nursing schedule, swimming, etc.

It's our house and our life, but it's so much different now.

Sleepyike

Whirlwind!

Ike’s birthday was yesterday! His nurses threw him a party with cake and ice cream and a present and balloon and everything. It was so sweet. He was a bit wonky still from having a bronch early in the morning, but he was with it enough to enjoy some ice cream.

The big news is that his airway looked so good we can go home. Like home home – back to Texas! We’ll be back in the ‘Nati in a month for another scope, but until then, we’re headed home.

Ike was discharged yesterday and today has been full of packing. We’re gonna hit the road as soon as we can (slight cases of food poisoning or stomach flu, be damned. It figures my hub and I would both wake up this morning all urpy and discombobulated).

So!

Home!

Now!

Pictures to come….

All worn out

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.

Photo(12)

Off the drugs and kickin’ back

Ike is all done with his tapering meds, so officially he should be finished with all the withdrawal nastiness. Woo! He was pretty shaky this morning, and needed to be back on oxygen last night and earlier today, so we'll see how things go.

He is so much more like himself now, though, and it's great to see. He's obviously not 100% and he's still having a hard time walking or playing for too long, but he's getting in some nice long naps and lots of vanilla-flavored Boost. Mmmm.

His scars are healing nicely. The one on his neck is a little bumpy, but I think that's absolutely fine. It's a badge of honor, I think. I hope he agrees when he's older. 🙂

If we can keep him off of supplemental oxygen then we can be discharged locally as early as mid-week! He has another trip to the OR in a few days to see how the graft is healing. If it looks good and he's off the Os we can go hang out at the hotel for another week before one last trip to the OR to check on things. Will we make it to Texas by Labor Day? I'm currently taking bets.

Here are a couple of pictures for you.

Photo 1

Photo 2

A better time, but a rough time

We've been moved to Complex Airway, out of the PICU, which is great! But poor, sweet Ike is having a tough time coming off the smack. Right now is the first time he's been asleep for longer than a few minutes in over 36 hours. It appears that while the Ativan helps tremendously with the shakes and his mood, it also makes him crazy manic hyperpants. He only gets it every six hours, but the crazy manic hyperpants lasts pretty much all the time. At least during the first few hours he's happy. Sometimes.

Today has been especially hard because he's obviously not happy and frustrated. He wants to be walking and playing, but feels terrible and can't get his legs to work. He had just a minute or two of walking behind a push toy while I held on to him and he was thrilled, but then his legs buckled and it was back to sitting or laying – not his idea of fun. Everyone says it's a matter of time

***

I had to stop writing then because he woke up after only 20 minutes. That was 4 hours ago.

We just put a trach mist collar on him, hoping that will help. More familiar. Now his scar is getting nice and misty.

My husband and I have been trading nights at the hospital, so at least one of us gets some sleep. Now if only Ike would get some sleep, too.