Tuesday, July 29, 2008

For Starters

Here's where we're coming from, in case you've missed the last 5 years. This was written by Tuffy a few days ago:

I'm pretty sure my daughter Rorysaurus is traumatized for life after the last couple years. She's almost three, and waaaay too familiar with hospitals. It started in January of '07, when she got a staph infection; basically flesh-eating bacteria. We took her to the emergency room when she developed a fever and a pimple on her leg turned into a swollen area the size of my wife's palm. The emergency room sent us home with the wrong antibiotic, and said to contact her pediatrician within the next three days or so.

In the morning she wasn't any better than when we'd left the hospital, so I demanded a same-day appointment with the pediatrician. Apparently, if we'd waited for day two, she'd have lost the leg, and if we'd waited to day three, she probably wouldn't have made it.

It gets worse. Skull surgeries and broken vertebrae abound.

Here's Rorysaurus :

So we got her taken care of, and aside from how the abnormal growth of scar tissue around the drain port they put in at the "pimple," she was fine. It had only eaten away at some fat tissue, but if it had made its way to muscle, bone, or connective tissue, we'd have had big problems. We had a surgery this year to take care of the scar, and now it looks like a small fingernail-clipping sized irregularity. The insurance fight lasted over a year.

So after the flesh eating bacteria, it was fairly normal for a while. I had a surgery for a hernia, but overall, medically, things were going ok. My wife was getting more and more pregnant, and just a few days before my son was born in December, my brother-in-law, who'd just moved in with us in October, got hit on his motorcycle. It crushed his ankle and put him out of work for months. With crutches, and later a cane, he was eventually able to return to work. Here's Needlenoggin , playing with Rorysaurus after he recovered.

Then my son was born a few days after Needlenoggin 's accident. Here's Little Monkey:

He had a bit of a funny shaped head, but the doctors told us not to worry. I think they were just being kind, giving us time to snuggle and love him, because at his 5 day checkup, we were asked to give him a CT scan, and told he had Craniosynostosis. What this means is that the bones of his skull had fused prematurely in four of the six places it could have done so (these places are called sutures), and would crush his brain as it grew unless we had surgery to break up and reshape his head. It was weeks of hell waiting for the surgery, not knowing if he also had one of the syndromes for which craniosynostosis is simply a particularly hellacious symptom. Turns out that although Cranio on more than one suture very rarely happens without one of these horrific genetic disorders. we were lucky. He's a fluke. No disorder, just a healthy baby with a messed up head.

His surgery was in January of '08, and it happened not a week too early. His brain showed signs of stress that weren't visible in the imaging, and holes were worn in the dura, the layer of padding that protects the brain. He was ok. He's happy and healthy and is getting new teeth. Here he is now, posing before an image of what his skull looked like before they fixed it.

Unfortunately, at the checkup appointment with the pediatric neurosurgeon in which we took that photo, we learned he'll need another surgery. September ninth is the date. We have insurance, but my wife set up a donation site here if anyone would like to contribute to all of the associated costs. Even with insurance, this shit ain't cheap (over $70,000 a surgery). If you would like to help, we could use babysitting, casseroles or a couple of bucks.

And that brings us to this week. Sunday night, a neighbor hit our parked car. Nobody was in it, nobody was injured, but I went to work Monday feeling miserable and pissed off. Needlenoggin had spent part of his weekend digging out a flat place in our yard for a new little playhouse to sit, and then spent Monday morning before he left for work playing with Rorysaurus in it. It must have felt so good to have that mobility back again.

Monday evening, I got home before Needlenoggin and decided I'd like to take Rorysaurus downstairs and play with her there myself. My wife said she was going to go run some errands, so I was in charge of both kids, and Needlenoggin got home shortly after she'd left. I told Needlenoggin what the plan was and started to head out the back door to the old staircase that winds down the side of the old Victorian house we share with 3 other apartment units, while he was getting changed out of his work uniform and would join me momentarily.

I paused in heading out with the two kids, and decided Little Monkeyneeded something warmer, since it was getting on into evening, though still bright and sunny. Dressing a baby can take a few minutes, so -- God, I'm crying as I write this -- I turned back to dress him properly. I sat down in his room, and was snapping on his outfit when I heard the crash.

Neighbors were shouting, 9-11 got at least eight different phone calls. I looked out the back door and everything seemed normal, until I looked to my feet. The landing outside our door wasn't quite there anymore. It had become a trap door that swung open under Needlenoggin's weight. I looked down from our second story apartment and saw him bleeding and crumpled at basement level, and I had no idea where my daughter was. He'd picked her up and headed out the door, and she wasn't there.

Apparently, he had grabbed her close, tucked, and rolled to ensure that she landed on top of him. By the time I'd looked out the door, she'd gotten up and run to our neighbor's door for help. Scratches and bruises are all she got from it.

Needlenoggin broke his back in six places saving her life. He will almost certainly never walk again. He was refusing treatment until certain that she was taken care of, but she'd been taken to a different hospital, one able to deal with children. My wife reassured him that she was ok, under observation just long enough to ensure there was no head trauma, no internal bleeding or other issues, and he relented.

I don't really know how to end this story. It hasn't ended yet. His parents flew up and waited through his eight hour surgery to see him at 2 am. Rorysaurus saw him, too, tubes, hoses, monitors and all, and has yet another strong imprint of hospital drama in her mind. We're hiring a lawyer, and we're advised to hire an investigator as well. We have to move in the next two months to a wheel-chair accessible place, buy a lift-equipped van and a wheelchair. He has no insurance, and yes, I know some of that will get re-paid after the lawsuit, but who knows when that will happen. All of this has to get done by my wife, with two kids, while she preps for Little Monkey's surgery, so if you'd like to help out our hero, here's that link, too. We'll see where it goes.

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