Tuesday, July 29, 2008

Rorysaurus Catchup

So, Rorysaurus has trauma. At first, she was pretty calm about the whole thing, telling strangers she'd fallen down with her uncle and all. Then, she found a picture her grandmother had drawn for her, and edited it.

Those are tears she's drawn on "her" face. "This is me. I'm crying." She went on to try and draw on her doll, Elizabeth, so she could cry as well. Fine, fair enough.

Then, Elizabeth lost her legs.

"So she can't walk." That's right, she's tearing the legs off of her dollies so they can't walk. She also holds imaginary conversations with people on her toy phone, telling them she has "cuts and bwuises." Oh, and she'll lay under her bunkbed clutching her Batman doll to her chest, and say "We fell. Go get help."

And her "painting" of Batman. First she painted him blue, and then decorated him in red.

"He's bleeding," she tells us. She cries, wakes up in a cold sweat with nightmares and won't leave Needlenoggin's room. She's never been a snuggly child, but now she's demanding to be carried and held, and weeping at the drop of, well, anything.

Oh, and she got a Doodlebear (a bear you draw on) from the fire guys. She draws owies and band-aids on it, and throws it down the front stairs. "You can't feel your belly. It hurts you!" (Needlenoggin was crying out that he couldn't feel his belly when he was waiting for the paramedics).

Getting near the back stairs (the door nearest the bathroom) has caused her to cry out that the stairs scare her, and to refuse to be consoled for 45 minutes and to assume the fetal position.


So, our wonderful, beautiful and perfect pediatrician is sending her out to a pre-verbal PTSD specialist. I feel a little Berkeley for sending my 2 year old the therapy, but what can I do? She's scared and haunted and horrified.

Needlenoggin Catchup

On Tuesday 7/22, I picked up my folks at the airport. They got to see Needlenoggin for a bit, then slept for a while. Needlenoggin went in for a spinal fusion surgery, and to have his shattered arm reduced (forcibly limit the swelling so it could be set and splinted). The surgery went on for hours longer than planned, but at 3 am we were able to see him.

Rorysaurus went in to kiss him, and our folks got to see him. It was rough on everyone. The next day he was sarcastic and pleasant, and we did our first lawyer contact. Same plan, basically, Thrusday through Saturday. Needlenoggin has a clot in his kidney that required a drug-adjustment, and he's battling ICU induced psychosis due to a lack of sleep. He now has two black eyes and looks like hell.

We were allowed to take Rorysaurus in to see him, and she was a little afraid of the doctors. She wanted to take Needlenoggin home, and so kissed his owies and tried to drag the bed out with her. When he couldn't come, she started to cry. More on that in the next post.

Anyway, he's lucid and they're going to try to remove his spinal drain and take him off the dopamine tonight or tomorrow. They're hooking him back up onto his CPAP (his machine for his sleep apnea) to see about getting him some more rest, and they've scrounged up a TV for him. He's hurting and lonely, but he needs to rest and I simply can't be there all the time.

On Friday, I simply couldn't take it any longer, and took a baby wipe and cleaned the bits of Needlenoggin's scalp away from the accident site. It was disgusting, and hard to do. his blood is still on the ground, his sandals where they fell.

Also, I've been to the Center for Independent Living and have been told he needs to apply for SSI, CASDI and EDD, as well as Medicare/Cal. Those will probably be done tomorrow. I need to get a notary over to get the power-of-attorney singed so I can sell his bike and sign a lease for him. I also will have to get rid of some parking tickets. :p

Oh, and the Oakland Fire Department came by the house with some toys and good wishes. They were horrified that the boards that gave way were swinging in the wind above our laundry room still. We were advised to call the Oakland PD to request a HAZMAT cleanup (the blood is a biohazard), which I will be doing tomorrow.

On the News!

So, Needlenoggin is in high spirits, has been battling a fever and having some more trouble with his lung contusion. He's stretching and doing his exercises divergently. He's on a new pain medication that is making him a little loopy, but is going to sleep tonight. His paternal grandmother, aunt and uncle came to visit today, which was nice.

We've had an outpouring of love and support here, with some DELICIOUS food getting delivered to Tuffy and I, and some of my "internet friends" coming to babysit the kids for a few hours so I can finish up my semester.

Oh, and his story made the news.

Click to see the video (not on Youtube yet). There's an ad you need to sit through.

We're still waiting for an article in the local paper (should be out in 1 or 2 days).

The other version

Here's the one I wrote:

Our third story landing collapsed today while my brother was taking Roy downstairs for some play time. He wrapped him self around her and held her as they fell. She escaped with minor cuts and bruises...any other way and she would be dead.

And I thought Little Monkey's ordeal was our biggest of the year. Needlenoggin won't be able to come back home here, and so will need a new place to live and a caretaker. We're seeing about the apartment downstairs (soon to be vacant). Anyone know a good lawyer in the SF Bay? Our landlord knew about the rickety stairs and did nothing to address the issue, and now my baby brother won't ever walk again.

It was almost Tuffy and Little Monkey, but they turned back to get something from the house. Oh God, my poor brother.

(and the one a few days later)

Needlenoggin went in for open-spine back surgery at 5pm on 7/22. It was supposed to be a 5 hour surgery, and stretched into 8 hours. They had to remove all the shards of vertebra from his back, and they'd planned to take bone from his hip to graft into the repairs, but were able to just use bone putty, steel rods and screws to shore him up. The top two vertebra were left alone, and will heal on their own (he's in a neck brace, but that is a temporary thing).

He has no sensation from his breastbone to his feet, although he can sense ice on his skin on his upper legs and pinpricks on his right toes. The doctors are pleased, but say tat this only makes it possible that he will be able to move at all. There is really no real chance of him ever walking again.

The building inspector came and condemned the stairs (closing the door after the horse is gone much?), making it impossible for two of the buildings four apartments to be accessed. One woman was in her apartment when the stairs were condemned, and so is in a legal quandry about leaving her home. The other apartment's tenants have had to undo a previous (seemingly illegal)remodel, and are climbing through our closet into their apartment above. We've given them keys, because otherwise, there is no way to get to their home. There apparently was a complaint in 2005 about the stairs, and nothing was done.

We've called a lawyer, and are meeting with him, an investigator and a reporter for the Oakland Tribune on Thursday and Friday mornings. I'll need to email those of you in the Bay about the next weeks' schedules as the kids are not allowed to visit in the ICU (although one of the neurologists broke the rule and let Rory come kiss him today). But, a I am his power of attorney since both his hands are broken, I need to be there for at least a few hours every day.

Crap. This sucks so much. He is in high, if sarcastic spirits, and understands his prognosis. In the next six to eight weeks we have to find a new home (one that is wheel-chair accessible) and move, as well as find and buy a van with a wheel-chair bay. We also have to sell his motorcycle and will get him on the list for a companion animal.

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.