Just after the Ativan

He's sad now, but for a few minutes there he was flirting with me. (I imagine he might be seeing me with seven heads at this point, but he seems tolerant of them.)

Just after the Ativan


I owe you guys a much longer post, but it has been a crazy couple of days.
Ike was extubated yesterday, which was wonderful! But getting him to wake up from all the movie star knock out drops proved challenging. It's been a real E True Hollywood Story up in here.
The good news is that he's breathing with his face! No vent! No trach! He's on a little O2, but that's ok.
The not so good news is that he's in the throes of withdrawal from the morphine and ketamine and all that fun stuff. So we're tapering with methadone and other than being super shaky and dopey and pooping 10 times a day (yay, poop, but… Yikes), he's chillin' and watching TV and trying to regain his strength.
Here's a dark pic of Ike-a-saurus enjoying some Disney Channel this morning.


A stylish new tube

It's not quite 10:30am and we've already been down to the OR and back and had rounds and everything. Whew.

Dr. Fancy Pants downsized Ike's endotracheal tube this morning, which is a good thing. We'll see how he does with it today and tonight and then talk about when we can take it out. Ike's still on the ventilator, and still on all the sedation and paralytics, but his new airway looked good this morning.

I can only imagine what this kid is going to think when he wakes up. Probably something like, "WTF did you guys DO to me? Everything was fine and dandy and now I'm addicted to opiates and ketamine and I have to cough gross stuff up into my MOUTH instead of my trach? What GIVES, assholes?!" But hopefully he'll be able to adjust quickly.

We've been over and over everything with ENT, about how, after extubation some kids need the tube put back in for a few days because they're just not quite ready yet. Sometimes the surgery fails and kids are retrached. There is a whole host of possibilities. But we'll worry about that when we get there. Right now, we're just happy to have a smaller tube and a baby (whom the nurses call Wild Man) finally sleeping calmly. I hate that it's taken so many narcotics and opiates and paralytics to get him calm, but there just didn't seem to be anything else we could do.

Now that he's resting with his smaller tube, Steven and I will try to rest, too. We know from experience that a little one going through withdrawal is no fun, and that will be the next step. They've already started the Methadone and Ativan, even while he's still on all the other drugs, to try to give us a head start on hedging off the withdrawal symptoms.

Whew. Tired. Arduous. But being in the PICU has shown us how fortunate we really are. We are so fortunate, so blessed, it leaves me humbled and thankful. Very, very thankful.

Just to prove how these blog posts jinx things

As soon as I posted that, we had rounds and they decided to give him a "holiday" off the paralytic. They did a test called the "train-of-four" where they put electrodes on a nerve on his arm and give him a shock "stimulus". It's supposed to make his hand twitch between one and four times. Well, his hand twitched zero times. So we've gone from too active to "uh-oh". Hence the vecuronium holiday.

Don't you think Vecuronium Holiday sounds like something the Romans would do to, like, celebrate Jupiter or someone? Or maybe it's a place in a Roman house where you go to sit and complain about things.

The Attending told us that ten years ago they used to keep kids sedated and paralyzed like this for 14 days, no exceptions, after airway surgeries. Holy shit. I think we did it for 14 days or so when Ike was first trached. That is just brutal and awful. So, hooray for it not being ten years ago.

Now I am going to go stand by the bed and await the Vecuronium Holiday. Perhaps we can send you a postcard.

sneaking this in before rounds

Ike is on a paralytic now to keep him still. We're closely monitoring his vitals to make sure he is fully sedated. Don't want to be paralyzed but not fully sedated. Yikes.

He's on some antibiotics and almost as many laxatives as sedatives.

I have to keep reminding myself that we did this on purpose to make things better. It doesn't seem very better now, but the ultimate goal is, you know… better. No trach is better. It's just a hard road to get there. We are just so fortunate to have this road to take, even if it's scary right now. And it is pretty effing scary.

I am also missing the wee one and the wee-er one something fierce. And the poor wee one has a cold and a fever and is very mopey, missing his folks, missing Ike. He's very worried about Ike, more than I think he lets on. He's mature enough now to know this is a Big Deal. We're trying to shield him from just HOW big a deal it is, but that's difficult when everyone is worried. Poor dude. I hope his fever abates soon. The first thing he said to me when I called last night was, "Well, at least I didn't get sick while Ike was home." Which a) is very true and b) makes me feel kind of like a monster for being the reason that's his first thought.

OK, the docs and nurses and a million other people are heading this way….

thanks for all the love, everybody.