Haiku of the Day

We had a party, and it was nice

Saturday night we got together with some of our friends and had the party that on bad days I wasn't sure we were ever going to have. On good days I used the idea of a party like this to just push through.

So when we walked into the reserved room at the restaurant and saw all the smiling faces of our friends - family, really - it was surreal. The last time most of us were all in a big room together it was for an auction to help raise money to pay for Ike's care and hospital bills. These are people who love Ike like their own, who we love, too, and it was overwhelming to have everyone in one place laughing and smiling and drinking and eating and watching Ike tool around the room making himself the king of the place.

Sixteen months ago was when we had the auction, and there was laughing and eating and smiling, but it was different. I was terrified, trying to keep it together out in public. Ike was at home with a nurse. We didn't know what the future would hold. My husband had been laid off. Between the both of us we'd probably had about 6 hours of sleep in the previous 48. It doesn't sound like 16 months was all that long ago, but it feels like a lifetime. To be completely melodramatic, it could have been a lifetime.

Our mortgage was paid, our groceries bought, Ike's medicines procured, bills paid - all through the generosity of these people we hugged and sniffled with on Saturday (and through the generosity of so many, many other people, too).

And now Ike is trach-free, Steven has a great job, all of us have slept six hours at the same time, in one night. We are finding our footing. The bookends of these two nights are so opposite, and yet they're not, because both nights were filled with the determined and unyielding love of friends and family.

I can't believe we actually had the party I was too scared to dream we'd ever have.

Now, of course, I just want more parties. More. MORE!

What a wonderful night. What wonderful friends.

My lovely friend Jote took this picture. She now has to take all other pictures of me and Ike forever.

Ike investigates a poster (designed by the kickass and super talented Jenny, of Websy Daisy) from the bake sales and auctions from when he was so tiny and sick. This picture makes me catch my breath. It's been a long road, you guys.

You'll never guess, BUT

Ike slept in HIS OWN BED from 8pm to 4am last night.

Can you BELIEVE that?

I give Benadryl a lot of the credit, but even so. Woo hoo! The nights previous to last night, he only lasted a few hours in his bed and then he was in my bed doing his very best to take up the entire King-sized space with kicking legs.

Maybe we'll get some sleep tonight, too. I can't even imagine - two night in a row. What?!

And in other news, Mr. Ike-a-saurus has his first true head cold. He has turned into a gross snotty boy overnight. Usually when he has a cold, we put a bib on him so it can catch all the snot from the trach (gross, yes?), so both of us are unaccustomed to all of the goo emanating from his nose. He's tolerated the myriad Kleenexes well, though. Now I just keep my fingers crossed that it's a quick cold and doesn't settle in his chest. Ugh.

The past few days have been busy visiting with his (former!) home nurses, and with me finishing up a lot of Medicaid paperwork and starting new paperwork for the trip back out to the 'Nati at the end of the month.

Mostly, though, things are quiet around here. Or, not really quiet with three shrieking kids and a barking dog, but you know what I mean. We're still trying to figure out a schedule and there has been a lot of running around back and forth from schools while we try to not be late everyday, but we're slowly figuring it out.

I've been so busy and happy I didn't even notice that I have apparently broken my foot, or my toe, or dislocated my toe, or some such horror. My foot is a lovely rainbow of purples right now, and weirdly, there is a new bruise on the opposite side of my foot, too. Like there wasn't enough room for the first bruise, so another one oozed out on the other side. It's feeling much better today, so maybe I can avoid the x-ray/co-pay/doctor rigmarole that I have come to not look forward to.

Here's to being so busy and excited that you don't even know when you break your foot!

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.

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.

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 (tm) 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 (tm), 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.

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.

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.

Sorry

The pictures are gigantic. I don't know why. I'll fix them when I get back to my computer later.

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.)

Whew!

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.

Guess what I forgot?

BRAINS FOR LUNCH releases today!

Here's a starred Publisher's Weekly review (swoon!). And here's the book trailer that I made at my kitchen table (with help from the wee one and wee-er one).

Yay books!

(And thanks to Courtney for the email reminding me.)

 

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.

PS

I jinxed everything to hell with that post.

Terrible night. Terrible.

I'm not saying any of this

I'm not going to tell you it's quiet here. I'm not going to say that it looks like the one-two punch of morphine and ketamine, combined with the three-four punch of methadone and ativan is working (for now). I'm not going to say anything about how they took Ike off the Vasopressin because his blood pressure stabilized. I'm not even going to tell you about his bath (that required a dose of paralytics, but still) to de-stinky-i-fy him. I won't tell you that his sweaty head is clean(ish) and that they removed all the drains from his incisions and even the gauze from his chest incision.

I'm not saying any of that because I don't want to jinx anything. Especially after this morning and this afternoon when he got so pissed he decided to hold his breath, even though the vent was still trying to breathe for him. Very alarm-y (in both the actual and emotional variety) and at one point the pulse ox monitor said 6, which very nearly made me puke on the bed.

I will tell you that the bugger still hasn't pooped (and who can blame him, really?). It's been since Tuesday. It looks like someone fed him a basketball. Colace, miralax, suppository AND a bit of a glycerin enema have produced nada (I shouldn't say "nada" I guess. It's the name of a Mexican restaurant here in town). Nothing. It's produced nothing. No poopies. We need an epic poop y'all.

Also, he is still a little feverish and his cultures are growing strep pneumo (which they kind of always do), but that has caused some hand-wringing.

We also had some good times with blood rushing forth from his mouth and nose - a story no one wants to hear - but it looks like it was just a nose bleed gone bad from the ET tube.

I am officially sick to my stomach, which considering everything, is kind of a record holdout on the part of my intestinal fortitude. The plan for tonight is to get Ike to poop and to stop me from pooping. We have opposing goals, but that does not mean we aren't still friends.

A quick update

Well, we knew this was going to be hard, but I'm not sure we thought it would be THIS hard. Turns out little dude takes after his mama when it comes to sedation. He fights it, he hates it, he wants to get up and run away. Just like I managed to wander around my hospital room and cry about being underwater when I was under the influence of Stadol, Ike is bucking and thrashing his way out of restraints and doing double donkey kicks at the nurses - all while he's chock full of fentanyl, versed, dexablablahreallylongname, ativan, methadone, morphine, ketamine, and or the paralytic "roc". "Is he 'rocked'?" the nurses asked when they were getting ready to re-tape his ET tube. "Uh," was the answer as he started to cry and turn his head. And this was after the shot of morphine.

The kid has the metabolism of, well, a very metabolic thing. Or he has a superpower against sedation. Either way, it has been a hard night and day. He's out of it enough to be groggy, but with it enough to fight and kick and sign "milk" over and over until your heart breaks.

We're worried that he's having a tough time with pain and that's what's overriding the sedation. So far, the Ketamine has worked the best, but it's not a long term solution. Of course, needing two people to hold an intubated kiddo still 24 hours a day is not a long term solution, either. The doctors and nurses and Steven and I are all trying to figure out what the hell to do. We think getting him to poop will help (well, not with pain, but with being comfortable). And then after that we just have to figure out how to keep him from getting so pissed. He's pissed to be restrained, he's pissed to have a tube in his nose, he's pissed to have the NJ on the other side of his nose, he's pissed that he hurts. He's pissed at the continuous flow of formula. He's pretty much just plain pissed.

He had a drain removed from his chest this morning (is that TMI? I guess all of this is), and remarkably, that was no sweat. His NJ failed and we had to put a new one in, that wasn't fun. And then his IV failed and we had to get a new one of those. The "quiet" Friday has turned into anything but.

Steven will be here with Ike tonight while I go back to the hotel to try to get more than 3 non-consecutive hours of sleep. Sleeping and eating are just wastes of time during all of this, I wish we could suspend them and be like hibernating bears, but awake and fully functioning. Alas. It's always hard to take care of yourself when all you want to do is take care of your baby. But I will try to sleep and eat and not crash the car into any poles in the parking garage. And so will Steven.

I am not sure how much time I'll have to update as the days progress. Things are just goinggoinggoing around here. So if there aren't any posts for a while, don't freak out. Maybe I will post a million times a day. I don't know. I always feel weird when it comes to posting medically things like this, even though I do it all the time. Like maybe I'm putting too many private things out publicly. I don't know if it's good to blog about this stuff. It makes me uncomfortable - but the support and love and wishes and prayers are INCREDIBLY comforting. So then I think it's OK. Blogging is sort of like a phone tree for the 21st century, I guess.

As you can see I'm all over the place right now and that is a good sign that I need to stop what I'm doing and take a deep breath.

Deep breath.

No ketamine for mommies.

Overnight update

Steven was here with Ike last night, while I went to back to the hotel for some pharmaceutically-induced dreams. Tonight it's his turn for sleeping and my turn to police hang out with the nurses.

Here is Steven's update that he sent out this morning:

Ike's stable.

It was a long but okay night. Started off with...More fever. More high heart rates.  More low blood pressures. But the night got better thanks to a great night nurse who 'suggested' we switch from Versed to dexmedetomidine as it causes less high blood pressure side effects. We also got tylenol, more IV fluids on board and started continuous feeds of formula.

After all those changes Ike's blood pressure is almost base line and his heart rate is just 20+ and not 50+ base line so that's better.

The Cotton team already changed his rib dressing this morning. The incision site looked great and Ike tolerated the dressing change well which is very good considering that he is only on a starter dose of dex but maybe him being asleep at time had a lot to do with him tolerating the dressing change so well.

Also, we are now on the schedule for TU for the next scope.

Ike's sleeping now.

We're on schedule for a PICC line to be placed at 10 am. This will allow them to remove the IVs and hopefully make the likelihood of an infected line much less likely. (Easier said than done - it was a central line that welcomed us to the world of MRSA the last time he was in PICU - not his PICC line, though.)

For that procedure, they'll move us into a sterile room and gown us up with masks and hats and stuff, but we'll be able to be with Ike the whole time.

Not a fan of this fever/high heart rate business, but he's on enough antibiotics to render an elephant squeaky clean, and we've been assured that fever is common after surgeries like this.

Hello, Thursday! Please don't be exciting.

I have no good title except dfhuibgigbhfjlhb [I am very tired]

OK, so!

The surgery went well. Ike has a brand new 7 mm graft (created from a rib) integrated into his trachea, replacing an area of collapse as well as replacing a skin tract, both of which were causing the stenosis.

Did that sentence make sense? I am so tired, you guys.

We're in PICU now. He is heavily sedated, but still wiggling enough to freak us all out. He has to remain sedated and still so that the endotracheal tube that is through his nose and down his airway stays still and helps stent the healing graft. It will probably be about a week that Ike will remain on the ventilator, sedated. We're trying to avoid the paralytic drugs because he had a hard time with them previously. (Or maybe I'm just remembering it wrong, or maybe there were a lot of other things going on that didn't help matters much. Or maybe all of the above.)

He has a big dressing on his side where they took part of his rib. There is a drain and other fun stuff. He also has drains on either side of the incision on his neck, and a huge amount of gauze, making it look like he's wearing a mock turtleneck just like cousin Eddie in the National Lampoon movies.

Lots of tubes and drains and technically he's not breathing on his own yet, because of the ventilator. BUT, the trach is gone. We just have to hope and pray and wish and cross our fingers that the graft heals nicely, doesn't swell or occlude his trachea, that there are no areas of collapse, that no infections pop up, that there is no invasive scar tissue or granuloma, etc. etc. We are still deeply entrenched in the woods here, not out of it by any means. But... the surgery is done. The trach is out.

Right now he's running a fever, which is scary, but not unheard of after a surgery like this.

It really is just plain scary to see him this way, just like I knew it would be, but also... the trach is out. Did I say that already? I think I did. :) It's terrifying to think about what's to come, and yet... the trach is out. Did I say that already? Now we just have to heal the graft, wean from the vent, not require any o2, learn how to eat and cough again, and we're good. Oh, and we also have to get the nurses and doctors (almost wrote coctors there. HA) to keep their voices down and their movements slow and steady. The calmer and quieter everyone is, the less of the sedation meds we'll need, and the easier the weaning process will be. We've already butted heads with one nurse and we haven't even been here four hours yet!

Overwhelming. It's all overwhelming. As is the support and love and prayers and good wishes from everyone.

Thank you, everybody. It means so, so much.

The surgery time for tomorrow is set

Ike-a-saurus is set for surgery at 9 am Eastern time tomorrow morning. We have to check in at 7:30 am.

The surgery should last 4-6 hours. They'll take rib cartilage and create a little canoe looking thing out of it that will then be grafted onto his trachea, eliminating the stenosis and creating an airway wide enough for exciting things like breathing! (Here's a site that explains the surgery.)

After the surgery he'll be sedated and intubated and taken directly to the PICU where we'll be for about a week, if nothing weird happens (says I, who knows something weird ALWAYS happens). After that, word on the street is that he'll be moved to the respiratory floor where we'll stay until the doctors are sure the graft is healing and Ike is eating and coughing OK. After that, we'll be released into the wild, but it will most likely be the Cincinnati wild. We'll hang out for another couple of weeks while he's closely monitored. And then - finally, then - if things still look OK, we'll be sent home for 4-6 weeks before we come back.

Of course, all of this could change. (And because I have jinxily posted it on the blog we know it will.) This all is just the outline we've been given on how things might and should go. We won't know until we're in the thick of it.

The thick of it begins in the morning. Until then, we're getting as many hugs and kisses and "uh-ohs" and dances as we can. This is the part of the party when I start to worry about being here. The dangers and complications of the surgery creep into the back of my mind and make it literally hard for ME to breathe, and my trachea is just fine. This is such a delicate surgery, on a delicate area, and if I keep writing this I'm really going to have a panic attack right here on the hotel couch, so I'm going to stop.

Surgery tomorrow.

Surgery tomorrow.

Surgery tomorrow.

This is the day we've been waiting for and dreading since Ike was trached at five and half months old. Will it work? Will he have to the surgery repeated one day? Will he have to be retrached? One step at a time, right? I have to remember that whole minute-by-minute, hour-by-hour thing we got so good at when I was in the hospital and he was in the NICU, and then the PICU. Everything from then has trained us for now. It's like we've been in the National Guard for Larynogotracheoplasty.

Surgery tomorrow. My hands are so sweaty they're slipping off the keyboard.

Things I have learned from Mary Roach today

screaming, fainting fan
Mary Roach is my Elvis
does she wear sequins?

I'm reading Mary Roach's new book, PACKING FOR MARS, and loving every second of it. I'm close to a third of the way in and it has become very apparent to me (and maybe only to me) that astronauts and trach parents have a lot in common. Like, if a mom of a baby with a trach decided to become an astronaut, she would get to skip like the first half of astronaut training. Seriously. It's kind of like taking all those AP classes in high school so you can skip most of your freshman classes in college.

Examples? Sure!

The ability to live in a sterile, man-made structure for possibly years at a time? Check.

The ability to manage overwork, lack of sleep, anxiety, isolation and confinement? Check.

Understanding and accepting the inability to escape one's environment? Check.

You must be aggressive, creative and brave. Check. Check. Check-ish.

You must be able to make 1,000 origami cranes in seven days. Wait. No. That's to be a Japanese astronaut. Those guys are weird.

Anyway, see what I mean? We just spent months trapped in the house, not sleeping, worrying all the time, unable to escape for fear of germs (instead of for fear of our eyeballs bursting from the vacuum of space, but you know what I mean), yelling at people on the phone, but then coming up with ways to get them to help anyway, etc.

So maybe this is why I feel like my husband, Ike and I are sitting on top of a rocket right now. The countdown was ticking and now we're on a pre-determined delay, waiting for the big blast off. We've been out seeing the sites, eating weird chili, watching barges on the Ohio river, but we're doing it all knowing that our countdown clock resumes Tuesday night.

Three more days. Can all systems stay go until then? Is it trickier to keep a kid with a trach healthy and in one piece for three days than it is to fill space shuttle tanks with highly combustible rocket fuel and keep Florida thunderstorms at bay?

I don't know.

But I do know this is a damn good book, and when I'm finished with it I might be ready to drop off an application with NASA, pending their approval of my AP courses in Never Leaving The House, Trying Not To Freak Out In Front Of People, and the really important one: Not Going Completely Insane From Stress.

Think I have a shot?