Crapolla. Is it Thursday already? Looks like I decided taking care of my son's medical issues took priority over blogging. I'd better be careful or I'll be kicked out of the Super Nerds Club.

The long and short of the last few days is that Spawnling is doing much better and we are home. He was discharged late Tuesday afternoon and is now resting here while he sheds his sickly exoskeleton and gets back to his more rambunctious, slightly less ornery self. He's making fart and bum jokes, which is always a good sign.

There are two not-so-good things going on right now that have us concerned. One is his heart, which the echo showed has a 'very mild' enlargement of the LAD artery. It's probably not a big deal and he may have had it all along, but since Kawasaki can cause heart damage this news is not sitting well with us. He has a repeat echo in six weeks (and we'll get him sedated right away this time - not like the epic fail two days ago where he lay there sobbing until they gave him drugs and waited 20 minutes).

A few people have said 'Well, at least the risk of heart issues is less now that he's received treatment'. Those few people would be correct: without IVIG treatment, Kawasaki patients have a 20-25% of developing heart issues. With it, the chance is reduced to 5-7%. That's pretty good.

Unless you play paranoid mother, a role I'm quite proficient at.

See, after your child is diagnosed with a rare disease everything changes. Statistics can be comforting one day and completely unimportant the next. On the surface, 7 out of 100 ain't bad. But considering Spawn was one of the fewer than 20 out of 100,000 to get Kawasaki Disease in the first place, that number seems rather high. Add in the fact that he has an enlargement of one of the arteries already and that makes for a very, very worried Maven.

But there's nothing we can do right now other than give him his daily aspirin dose and hope for the best. The next few weeks are when any heart issues will arise. They tend to form in the later stage of the disease.

The other issue that cropped up is vision-related: Spawn can't look right with his right eye. It stares straight ahead when he tries. It could be a couple of things, and one could resolve spontaneously as his health improves. But there is a good chance he will need some long term care to make his eye work properly again. Why is this happening? We don't know. He did have some weak eye muscles at birth which quickly strengthened and required no follow-up, and they could have relapsed when he got sick. He also had very swollen eyes for a few days and it might have damaged the nerves or muscles temporarily or permanently. We see the opthalmologist again in three weeks.

Maybe this time he won't scare one away with his Kawasaki screaming and draw blood on the other one's arms with his sharp little claws. 'Ooh! Look at those scratches. Impressive!' she declared yesterday after he let her know how unhappy he was.

'Please don't sue us' I half-joked.

She grinned. 'Usually it works the other way around'. She officially made my Awesome People List with that joke.

***

I know I don't tend to get serious very often and try to keep this blog light-hearted, but sometimes I just can't. I'm sad right now, and that makes funny hard.

I am so grateful that my baby boys is doing better. There isn't an hour that goes by when I haven't thought of him when we first brought him into the hospital; when I honestly thought I was going home without him. I hug him all the time and thank the powers that be that he's alive and mostly well. I try to take his moodiness in stride; it's something that will pass, after all, and every day we see a little more Spawnling and a little less Kawasaki.

But in some ways he's not the boy I knew less than two weeks ago. He's weak and shaky. He's nowhere near being back to his old, energetic self. Add to it that he can't see well and you have the makings for a frustrated, unsure child who wants to run around and play but is afraid of falling over. And when he does fall, he cries for a long time. Seeing him struggling with his own limitations kills me inside.

I try not to worry about his heart, but I do. I wonder what's going on in his chest despite our best efforts. Will he drop dead of a heart attack at four? At six? At twelve? Will I ever feel comfortable not watching him like a hawk? Will I worry every time he's out of breath? Every time we go to the park? Will I be that parent who begs for follow-up cardiology appointments even when they give us the all clear? Will they say 'Uh oh. Here comes that crazy Maven again. Alert security. Tell them if they launch a latte out the main doors she is very likely to follow it.'

In 12 step recovery programs we're taught to take things 'one day at a time'. With eighteen years of sobriety behind me you'd think I'd have that well entrenched in my psyche. I'm trying, because all this worrying isn't doing us any good.

But this experience has fundamentally changed me in ways I haven't completely figured out. I now know how quickly life can change and how little control I have over the whole thing. Apparently I'm not queen of the universe after all. I am keenly aware of how precious life really is, and not in some cliche, saw-it-in-a-movie kind of way. I also have more empathy for anyone who's had a very sick child, and a deeper respect for the strength it takes to have one who is chronically ill - a club I hope we never have to join, but if we do we'll be in good company.

Also, I hear they have cookies.

I'm sad a lot lately, and not much fun to talk to. When we were at the hospital it was all go, go, go, and the constant adrenaline rush helped me get all the things done that needed doing. I cared for Spawn, met with doctors, interacted with nurses, researched everything going (to the point where a few people thought I had a medical background - I told them I just have a giant brain), updated people and took care of myself. But now that we're home and I've had time to fully appreciate what has happened, my emotions are running amuck. This is why I've been so quiet. I just don't have a lot to give right now. I hope that gets better.

I know it will get better.

The wound is fresh, but some time will heal it. I'm well aware that things could have been a lot worse. I'm also aware of how awesome I am, and how I will bounce back as Spawnling does. Geekster, Intrepid and Gutsy will, too. We're all feeling a little low, but we'll be okay. We'll schedule in some quiet coffee visits with friends and family, get ready for back-to- bliss school, go to Spawn's appointments and take it from there, a day at a time.

It will be okay. Also, the next post I have lined up is significantly more lighthearted than this one. I just needed to purge the yucky stuff first.