Dr. FancyPants, you old softie

Home!

We got home from the 'Nati late Saturday afternoon. It was a whirlwind trip, and somehow we managed NO flight delays! There were still some harrowing hours chasing an overtired toddler through O'Hare during a layover, but overall, the traveling was fine.

The hospital was fine, too. I love that everyone remembers us, but I guess that's not too crazy because we've only been home a month. The same day surgery ladies are all so nice.

Ike had his scope on Friday morning (after an hour delay – ugh. Two-year-old + 11:40am + not having eaten since 2am = blerg). As we always do, we went with him to the induction room and I held him on my lap while the anesthesiologist put him to sleep. This is the first time he's had a mask over his face, and we were worried about how he would tolerate it, but he did GREAT.

I was the one who had a problem. I had my head angled down to kiss him on the cheek as the nurse was gently easing the mask to his face. So I managed to get a lungful of (bubblegum scented) gas before Ike did.

Fun times.

My head starting rising off my neck and my first thought was, "Am I having a panic attack? But I feel so calm." Then my next thought was, "Oh shit, I'm passing out." Next thought: "Or, wait, maybe I'm going to puke." Next thought: "Everything looks fuzzy around the edges." And then, FINALLY, I realized what had happened and I took a couple of deep breaths of non-gassy air.

I didn't fall off the chair, taking Ike and the gas apparatus with us, but I surely almost did. Ha.

Ike went down very easily and the procedure was super fast – maybe 10-15 minutes, tops.

Dr. Fancypants practically skipped into the room, which was awesome. Over all of the scopes and even with the big surgery, we've only shared a few words with him. Usually, it's a nurse or a Fellow who gives us the big lowdown on everything that's going on. This time, though, he burst into the room, with a huge smile and a thumbs-up and said everything looked great. The graft looks fantastic, there's no scar tissue or granulation, we don't have to go back for any more tests until December (unless something happens).

He told us how he performed a similar surgery on his own daughter 35 years ago and now she's 38, with two kids and a PhD in speech pathology. He talked to us about how difficult the surgery is, and how difficult the recovery is, but with a big smile on his face he said, "It's worth it, isn't it? Do you think it's worth it?"

I was struck speechless by both his candor and because I couldn't think of the right, emphatic words to say, "Yes! Yes! It's worth it!" I just wanted to seize him and hug him and cry a lot, but I didn't.

Soon after that, we went into the PACU to snuggle Ike as he came back up from being under. Then not too long after, we were back at the hotel trying to keep him from launching himself from the bed to the dresser and back again.

When we were waiting for Ike to wake up, our nurse confided to us that it had been a difficult week for everyone. Lots of kids had come back for follow up scopes and not all the news had been as good as ours. She said a few of the kids were going to have to have the reconstruction repeated. That's hard news for everyone, even the doctors and nurses, so she said after a week like that everyone was overjoyed with Ike's progress. It was the last scope of the week and a good one for them to end on.

My heart goes out to those other families. I am terrified we will get that news someday. And our nurse told us to be vigilant with our follow-up visits. She said even if things seem perfect, there could be granulation or a problem with the graft and we wouldn't know until too much damage had occurred. That's why they have such a rigid follow-up schedule. And that's why we will be traveling at the height of cold and flu season to go back.

Whew! Now it's time to buy groceries and get flu shots.

Spillingbubbles
very serious about spilling bubbles in pre-op

WKRP, here we come

We're off to the Nati in the morning so that Ike-a-saurus' fancy new airway can get the once over. It feels like we JUST got home and here we are going back. But at least we were able to come home between scopes.

We fly out in the morning, Ike goes under on Friday morning and then hopefully we come back home Saturday morning. No whammies, no surprises, no major airline delays, no Twelve Monkey plagues.

I have borrowed no less than five inactive mobile phones to keep Ike entertained on the plane. I hope TSA doesn't mind.

The crazy, it has begun….

Baby milk and an ass bite: or, the story of how I do not have it all together like you might think

A lot of times people ask me, "How do you keep it all together? You write books, you have kids, you blog, you have all this stuff going on with Ike-a-saurus, HOW DO YOU DO IT?"

I always say something like, "Oh, I don't know, you just do it." Or "I don't really keep it all together, you should see my kitchen."

Today, though, really proves the point that I do not, in fact, have it all together. I do not actually have even little pieces of it together.

After working on a blog post for SEVEN HUNDRED MILLION YEARS (when it should only have taken five hundred million) and getting BIT on the LOWER ASS (or upper thigh, depending on your view) by a certain small dinosaur who is known throughout the land for hating the guts of my laptop, I took said dino on a ride to pick up his sister at school.

When I got to the school the wee-er one said, "Why did you give me baby milk in my lunch?" And I was like, "Whuh? Huh?" So she said it again like I am hard of hearing, "WHY. DID. YOU. GIVE. ME. BAY. BEE. MILK. IN. MY. LUNCH." I had no idea what she was talking about so I grabbed her lunchbox off the shelf and opened it.

Here is what I saw:

Photo(17)

That's right. A bottle of Boost and a bag of croutons.

I'm not sure what's worse: that I somehow managed to send her to school with this, or that I DON'T REMEMBER DOING IT.

I remember hunting around the house trying to find Ike's bottle ("where did that damn thing go? It was RIGHT HERE"), not finding it, and giving up.

I remember asking what she wanted to eat for lunch.

But that's it.

Back at school, her teacher said, "Don't worry, I made her a bean and cheese taco. [PAUSE] You must be really sleep deprived." Haha. Indeed. Actually, I am sane deprived.

So there you go. For everyone who is all, "I don't know how she does it! Writes books! Has three kids! Blogs!" The answer is clear: I don't do it. I wing it. And on days like today, with a bitten ass and a crouton/Boost-filled lunch box, I obviously don't wing it very well.

Now what was I doing again?

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.

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

Photo(15)
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!