Day Three - Post-Surgery

Day Three Post-Surgery, Aleks was able to smile. We also got his nose cleaned up a bit more. He has a stint in the right nostril to hold the shape after his nose revision. His old nose is gone. Aleks wanted me to share this photo with the online friends all rooting for him. He says, "hi." It was taken just before we had the following conversation:

Me: Don't punch your brother. It will take too much out of you.
Aleks: Yeah. You're right. I'll punch him later.
Me: You can punch him tomorrow.

In the evening, our friend Heather came over for her birthday to drink some wine with me and to help us build the Lego Hogwarts Castle Aleks had gotten in honor of being chopped up and sewn back together. It had 3 instruction booklets and 10 bags of pieces and was the largest Lego set we'd ever had. We originally started working on it altogether, but when Heather arrived and Jon joined in, we split into teams because there were too many of us. Aleks worked on the first booklet alone. Heather and I took the 3rd booklet. Jon and Bastian were in charge of the 2nd booklet. Split like this, the work went quite rapidly. The finished product is very cool too. The boys have been using it like a doll house.

Day Two - Post-Surgery

My mother was staying with us to help with Bastian while we were in the hospital. She normally lives four hours away. The morning after we got home, she called out, "Who wants pancakes?" Aleks replied, "I do!" Then he ate a pancake. Cut up in very small pieces. With a plastic spoon. Still.

Aleks got to play a lot of video games with lots of pillows under him in the chair without even having to share with his brother. He said he couldn't smile. This was his attempt. At this point, he was still on Tylenol with Coedine pretty much every four hours, though by day three, it started to space out a little bit later in the day. The swelling was still apparent in his face, so he didn't quite look like him yet either.Bastian was very upset that Aleks got to do everything and eat all the special food (smoothies, Odwalla juices, organic Spaghetti-o's (something we've never bought)). We sat outside on the stoop discussing what precisely happened to Aleks and why he was getting to do everything. Bastian later teased Aleks for being slow and unable to eat chips. It was not precisely what I had in mind with this discussion, but there you are.
I was also forced into a piggy-back ride. He just climbed on top of me.
Aleks also had raspberries. Still very slow, not much really happened on Day Two. My mother went home to Dayton though, because we seemed to have it all under control.

In the evening, I was alone with the kids for awhile. I got Gnomeo and Juliet for us from Redbox and Aleks and I watched it together on his bed. He ate pudding. Got it all over his face as he usually does. After the movie, Aleks needed to get up from bed to go to the bathroom. It had been taking quite a lot of time to get to standing in general, so I thought to make a video of it. This particular instance took five minutes just for him to get to sitting and we ran out of memory and missed the part where he stood.

First, in real time, Aleks from laying to sitting up:


If that takes too long, check out the quadruple speed version. I find this version far more terrifying because you can see his breathing and the speed of it makes him look frantic, scared, and in great pain. It really wasn't that bad.

Day One - Post-Surgery

Jello for breakfast.

An art therapist came to offer Aleks the opportunity to have something interesting to do from bed. It turned out she already knew Aleks because she lives near our house and walks her dog on our street. Aleks knows all the dogs on our street. I don't, but he does and their owners tend to know Aleks. He worked with some clay-type stuff. Later, a volunteer who brings a dog in came by for Poodle therapy. Aleks liked that a lot.
Afterward, Playstation2 was been discovered for our room so Jon & Aleks were saying things I didn't understand like, "I love that move." "What? Mana 2?"

I wrote the following update for the interested parties on the internet:

Aleks has been very excited by the outpouring of love for him on the internet. It makes him feel good whenever he reads what people have written. He hasn't been able to read it all yet, though.

Right now he's playing Playstation2 in bed. The doc who did rounds this morning told us that he needs to eat and drink and pee and walk before we leave. Aleks does NOT want to walk though. He would prefer to leave the hospital after his pain has been controlled. I'm all, "um..." about that. But we're still here. He looks a little rough right now. His nose kept weeping through the night so he has dried blood on his face. His hair is crusty from where they washed him with iodine for the ear tubes and greasy and sweaty from sleeping besides. He had an accident in the night and woke several times besides to pee due to all the fluids he took in (mostly by IV) during the day. He'd only peed once before we went to sleep for the night. He has to pee in a jar so they can measure his output and also because he's not walking yet.

He has two heplocks in so both hands are all taped up. When he and his friend Jacob were having a video conference on my phone yesterday, Jacob thought they were lasers, so Aleks made them go "pew! pew!" at him. The nurse finally just took the pulse ox off for his awake hours. Initially, it was his nose that hurt, but now it's mostly his hip. It took him awhile to be willing to down his meds (tylenol with coedine) so his schedule on that just now got regular. I told the nurse this morning that I wanted him to have it every four hours so we could get him moving. If it wears off at all, it's going to be harder to convince him to get up because he gets more lethargic with more pain. He's pretty lethargic anyway though. He also is hot as hell, though it's not a fever. It's a low grade temperature - like 99 - but he feels warm to the touch. Whereas I am always freezing. He made me sweaty while I slept with him.

It looks so beautiful outside. I wish we could go home. We're just trying to be patient and nice though. Jon's being really awesome. I'm far more practical, I think, so I'm all, "you need your ear drops now." Not that I don't cuddle and joke, but he and Jon are buddies. He won't let me move him, for instance. He prefers Jon to do it or for him to do it himself. He doesn't trust me to be gentle enough. I dunno. I just let that one go. Jon can move him. I'll insist on pain meds.

At least Cleveland Clinic has some decent food options. We'll probably take turns going home at some point today if we can't get him up and moving around to be discharged.

In the afternoon, while Jon ran home to shower and change and get some stuff for us, an aide came by and we got Aleks to get out of bed for the first time and try to walk. The bone extraction site on the hip tends to be the most painful part of healing. It took quite awhile to get up out of bed, but once he was standing, walking wasn't so bad. He made it about halfway down the hall.
Jon brought back tons of cards and letters that I'd requested folks send to Aleks. Our friend who works for a proctologist sent office supplies and this ribbon:
Aleks at one point paged the nurses to request that the art therapist return to visit him. He painted this mask. He was pretty worn out by the end of it and took a long nap while Jon and I played Scrabble on my phone.
One of the homeschooling families in our Co-op dropped balloons and ice cream off at the house. Jon brought these too.
There was a Starbucks on the first floor of our building and I passed several Bill Watterson drawings on the way back and forth.
Hospitals are full of endless corridors, sterile and cold, running maze-like through the campus.
Since we got him walking and taking in liquids and peeing, we had the nurse try to find us a doctor to discharge us. It took hours. The only plastic surgeon available was in surgery for quite awhile. He didn't read the chart, so didn't understand why Aleks' hip hurt, but was satisfied with our argument for leaving and let us go. It was mostly stupid.

We also requested transport to leave the hospital. The woman who was supposed to push him got pretty impatient waiting on us. We had to get Aleks in clothing and out of bed though and with the sore hip, it took quite awhile. He was very very slow moving. A member of housekeeping also showed up and stood outside our room waiting for us to leave for quite awhile, getting irritated and impatient. I guess once you're discharged, you're supposed to vacate very quickly. Unfortunately, the whole reason he was hospitalized was because he can't move very quickly since they cut open his hip. We ignored them, but it was stressful nonetheless. I took over transport duties.
Once home, the first thing Aleks did was play a video game. After a bit, Jon helped him move to the couch, where he fell asleep pretty quickly while watching his favorite show, River Monsters.

How it Went - Day of Surgery

I meant to do this every day as we went along, but, well, I didn't. So I'm playing catch-up, as I am want to do. I have finally figured out that I can indeed blog from my phone, so I'm hoping that that's how I'll spend the summer and then folks will read this again and stuff. Anyway...

I'll include the live tweeting I did of the day...

Ordinarily, when I see 4 a.m., it's decidedly more fun & involves resting my head after drinks with friends as opposed to making coffee.

Aleks' feet needed washed from running around at the Grog Shop during Harry and the Potters last night. Refused to brush teeth.

In line with fifty thousand other people having surgery today. It's like Soylent Green or something. #madeofpeople

Large groups of patients and family members disappear behind the wall...

Only the children remain...


Aleks is pointing out all his boo-boos after being asked about bruises or rashes. Now explaining who his cats are.

Examining his pulse oximeter
We found Cartoon Network. All is well.
What Jon does while waiting...
Aleks wanted me to share this photo with all his followers on Facebook and Twitter (there were many).
The Physician's Assistant came in. Getting closer...

I suit up to go back with him.
He's in surgery now. Foamed at the mouth from the gas, but stayed mostly calm and went to sleep.

Au bon pain plays crappy light rock. Also only have diet soda. But the croissants probably have real butter.

No updates via page from the OR. We ate lunch, sat outside for awhile, then navigated back to our building. Then we found the Minotaur.

Overheard in CCF halls: someone singing Strangers in the Night and someone saying "Girl, you so fiiiinnne."

Since Jon and I were alone in the middle of the day, enjoying lunch together, then chatting, it was almost like we were on a date.
Pager had us go to find a doctor, which freaked me out. Upon investigation, just needed to sign a consent form for the ear tubes.

The bone graft & nose revision part is done and went perfectly. He's getting ear tubes right now.

As an addition, Mr. HotShot Magic Hands was his usual arrogant self. I asked if he would be doing rounds in the morning. He said, "Oh no, I've got to present a paper in DC tomorrow. Then I come back, then I'm in Virginia the day after that and I've got another conference." I just nodded and asked who would be doing rounds, but what I wanted to say was, "Dude, I don't give a fuck about your career. Will you be taking care of my KID or not?" I was assured "someone" out of the 17 doctors he works with would come around. Great.

He's awake. He says he feels like shit.
Meds working and going in and out of sleep.

The pulse oximeter glows inside Jon & Aleks' clasped hands...

Transferring upstairs.
Transferred to a room. Watching cartoons again. He's not answering questions anymore.

The following are currently disallowed: forks, metal spoons, drinking straws, fingers, crunchy foods, and liquids that are not clear.

Aleks says he didn't lose his sense of humor in the operation.

Aleks is very excited to discover that he can now bend his left leg without his hip hurting. Meds must be working.

Jello for dinner.

Hates ear drops. Jon has to roll him over every time he wants to switch sides. And Aleks is apparently destined to write comedy because he peed in a jar.

Under dim lighting, with the buzz of hospital machinery and the sound of the opening and shutting of doors off in the corridor, a father reads The Hobbit to his son, who, filled with holes in mouth and hip and hands, listens intently.

Harry and the Potters, 5/30/11

The night before surgery, Aleks hits the bar. We walked up to the venue up the street from our house to see Harry and the Potters for the second time. Bastian opted out, but our friend Heather came with us. She had never seen the before, but watched We Are Wizards and knew she liked them. Because who wouldn't?!?

At the merch table, they had a special briefcase which required an opening spell, "Alohomora!" Inside was just secret merchandise. Very cool, secret merchandise, of course.
I loved this lady's t-shirt.
Heather and I spent time messing with our iPhones (nerds) while Aleks gulped down Sprite.

The opening band, Shisho consisted of a 14-year-old girl and her 10-year-old sister. Harry and the Potters write:

They’ve been playing together for 6 years. Apparently they got inspired after seeing us play in the basement of Macs Backs in Cleveland on our first tour in 2004. The frontwoman, Vivian Ramone(!) would have been SEVEN at that time. HECK YES! This warms my wizard heart.

They played some nerd-core song I'd never heard of.
Then the main event.
See Aleks down by the stage, bottom right.

A friend's baby enjoying show.
Aleks running around like a maniac, swinging his arms, hanging out with Shisho's little brother.



They finished up with a great encore:


Heather loved it all.

Bastian Turned 6

So in the midst of Aleks having surgery, Bastian also turned 6 on Sunday. We had a little party here at home. My neighbor Angie made us a fabric banner for birthdays, which will now fly from our porch whenever there is cause for celebration. So if you're walking by, you'll know what's up. We made pancakes for breakfast. He woke up and I saw him walking toward the living room, so I called him over to my bed and we had the following exchange:

Me: Happy Birthday!
Bastian: Thanks!
Me: Want some breakfast?
B [tapping chin in thought]: Hmmm... What's a thing I can do for breakfast?
Me: Pancakes?
B: Genius!

The "genius" was also accompanied by a hug and a cuddle.
We put Lego guys that Bastian picked out on his cake, which was our usual sour milk cake, but chocolate, using a recipe from The English Kitchen blog.