He's a rock star

Wow, what a stressful day. Don't get me wrong, I get that way more stressful days hit a lot of families, especially SMA families. But today was Kyle's surgery and our first experience with general anesthesia and I was pretty wound up.

It started last night, when his anesthesiologist called to get some background on Kyle, on his current status (healthy, no complaints other than knee contractures), and on SMA. Then, I woke up at 4am today to get us off to Phoenix Children's Hospital at o'dark thirty.

Surgery was scheduled for 7:30am, and the doctors were running early for once. Kyle was pretty thrilled with a rocking horse in the waiting area (I had to prop him on the horse the whole time, of course), but he was less than thrilled when I handed him off to the anesthesiologist outside his OR room.

Seriously. How do parents do that, leave their kids and walk right out of the OR? And let me tell you--I am TOUGH. I have zero trouble stern-talking my kids into blood draws and vaccinations and timeouts. You will be still for x-rays. You will stop spitting. You will sit properly at the dinner table. You will not pick your nose in public. I have no mercy. I'm all kinds of "rules with an iron fist". But sweet Jesus the kid was screaming, "no no NO momma momma MOMMA MOMMA!" and was slumped up against the shoulder of the anesthesiologist (you SMA parents know what I'm talking about when it comes to a stranger handling your type 2 baby) and the tears were a'flowing. I marched out of there seven different levels of brave. Sort of. Unless you looked too closely and then you could see my distraught.

Anyway.

Worst case scenarios would have involved terrific trouble inserting his IV. Requiring use of a ventilator once anesthetized. Even potentially a lung collapse after extubation. Also a 1-2 day hospital stay for observation.

Best case scenario involved no ventilation, no respiratory concerns, short operation.

We got the best case scenario. Surgery was at 7:30am, and he was cleared for discharge by 10:30am. We barely got to spend any time with Jaci and Mike Felix, whose daughter Alexa is going on week 5 in the PICU for severe respiratory illnesses, and I actually was sorry that I didn't get to hang out with them more. They've been stuck in the hospital for over a month, and we consider them good friends and I looked forward to hanging out with them in the parents' lounge. (There IS a parents' lounge, right? Complete with free wi-fi and unlimited bottles of Jack Daniels and chianti? You look confused--is this assumption wrong?)

I got him home, he had a little nibble of food, took a bit of a nap, watched Blue's Clues, ate some cupcakes for dinner (hi, I'm Mother of the Year), and then went to bed early.

I'm going to try to block out the part where this afternoon I dosed him with his Tylenol 3 and he experienced an allergic reaction and I sat there with Lauren's Epi Pen Junior in my hand wondering when it was "shit or get off the pot" time when it came to deciding he was okay enough or just plunging it, and then he stopped with the choking and coughing and seemed okay-ish and I called the doctor and so hey we're going to list "codeine" as a drug he's allergic to from now on.

In any case, he's doing fine tonight. Sleeping (mostly) soundly. At home. No more hives or purple swelling. Lots of Motrin. A decent amount of stitches in places you don't want to know about. Good times.

My hat is off to you more experienced parents, when it comes to surgery and stitches on sensitive man-parts. As it turns out, handing my baby off to a relative stranger while said baby goes into hysterics is my kryptonite....

The only photo I took the entire day, in recovery:


p.s. GO PHOENIX COYOTES. AROOOOOO! First playoff game is Wednesday night, 7pm. I won't be there, unfortunately. Blarg.

Checking In

There are a variety of SMA kiddos sick in the hospital these days, but locally, my primary concern is sweet Alexa. She's just a few months younger than the twins, and dx'd with SMA type 1. She is such a sweetie--and her whole family is Good People--and I want her to get well and get home fast. I don't like the idea of her in the PICU and I adore her parents, Mike & Jaci, to death. It's so hard on the parents when our children are hospitalized. But Alexa has tested positive for HMV, MRSA, and staph, and was intubated Tuesday.

New to my blog? Don't know what Spinal Muscular Atrophy is? Here's my take on it. And Jessica Gustafson's take on it. And ExtraordinaryMommy's take on it. And, from a clinical perspective, here's FSMA's take on it. SMA is one of the 43 recognized muscular dystrophies. If you donate to the Jerry Lewis telethon or buy an MDA shamrock at your grocery store, then you support our cause, too. In short, SMA is a genetic, terminal degenerative muscular disease which affects children. I could go on to explain further, but there's not much else to say. It is the suckiest suck to have ever sucked--so yeah, okay, there's that.

So, Pepsi is hosting a contest called the Pepsi Refresh Project. There are different tiers of awards, but--lookie here!--the highest award tier includes an SMA charitable organization! So, yet again, I beg you to register at refresheverything.com and vote for Stop SMA. Their winnings will be forwarded to SMA research, and you can vote daily for this organization all throughout March. I am voting everyday, so if it will help, I can email you, or tweet or Facebook you to remind you to do the same everyday! Just let me know, and I can add you to my list.

And I can't let this slip past everyone--Victoria Strong has been named one of the Real Strong Women for March by sorority Alphi Chi Omega. Also, Victoria's birthday was Monday--feliz cumpleanos a ti, Victoria! xoxo

p.s. Do you Twitter? If so, find me there, would you? I follow 600+ people on Twitter, and at least half of them are useless. I'd love to get in touch with useful folks. ;)

A Disney Store is Really Just a Disney Store.

Today was the grand opening of the Disney Store at Arrowhead Mall. It also happened to be a day with no school for Jenna, for some strange reason. So the four of us arrived to the Disney Store 20 minutes before it opened, which was CLEARLY ninety minutes too LATE.

















So after waiting 20 minutes for the store to open, we waited another 20 minutes for all the crowds in front of us to get in and out of the store in order to avoid a citation by the fire marshall for having too many people inside. And then? We raced through the store in 5 minutes so that we could wait in the checkout line for 25 minutes. And guess what? There were no extra special one-day sales, and all the merchandise is pretty much the exact same stuff they had three years ago. Even so, that didn't get us down. We were at the second-most Happiest Place on Earth. At least the children all got free mouse ears, and aren't they completely thrilled about that?

We hung out with the Felix family yesterday, as well as the Harmans and another family whose new baby was just diagnosed. Alexa Felix has SMA Type 1, and the most gorgeous light brown curls in her hair that I've ever seen. They all bonded over Blue's Clues, while the adults bonded over pizza and football and beer.