Needlenoggin's Update (Part 1...through Thursday)

Wow. Let me tell you, I hate red tape. Now, for those of you who know me, this will not surprise you. However, I hadn't really realized how badly the health care system in this country treats poor people, no matter how deserving of care, is beyond me. I mean, Needlenoggin had a job when this happened, but didn't have health coverage because of his previous accident in December, so he's got to wait for Medi-Cal to approve him so that he's not out the hundreds of thousands of dollars his bills have stacked up to just from the ambulance and the first hospital.

Alright, so on Thursday we went down to his center to discuss his discharge plan, figure out his equipment and see what everyone had to do to go abut getting him home. Turns out, especially with his Medi-Cal and CASDI applications still pending (2 weeks after they should have been approved), that his discharge plan was this:

1) He will be provided with a manual wheelchair (that he cannot push due to his broken arm).
2) He will be waiting on the curb for me to pick up on 9/17 (three days after we've been allowed access into the new apartment and 3 days after Julian has come home from the hospital).
3) He will have no lift (to transfer him from his bed to his chair and back), since Medi-Cal has not yet processed.
4) He will have no hospital bed, since Medi-Cal has not yet processed.
5) He will have no shower chair to bathe in, since Medi-Cal has not yet processed.
6) Even though he cannot use a manual chair at all now and won't be strong enough to use one full-time for a long, long time, Medi-Cal will not be paying for an electric wheelchair for him.
7) Even though he will need medications given to him, help getting in an out of bed as well as assistance with all of his self-care and daily-living (at least temporarily), they will not be sending him a a care-giver. I can be trained to do all of these things (sometime between now and the 17th), and in the next 4 to 6 weeks he may be able to get In Home Support Services to come up with funds to hire someone (although they pay very, very little), but that won't be until he is home for a few weeks, and cannot be applied for until Medi-Cal has processed.
8) No, the will not keep him 2 extra weeks until I and Julian are healed from surgery.

We also found out that he has a picket of spinal fluid that has built up in his back, and is causing him to lose sensation in his C8 and T1 registers, and that he is considered impaired at C8 and T1 on one side now. Oh, and he's lost sensation on one whole side of his body, even though he had feeling there when he transferred in. They've apparently been aware of the growing pocket of fluid, but haven't dealt with it because the surgeons at Valley don't want to step on the toes of the surgeons at Highland, and even though they've tried contacting his surgeon through the one pager number they have, have not looked up other phone #s for him, or even his real name, nor have they called me and requested this info. I didn't even know about the fluid issue until Thursday at the meeting.

Grrrrrrrrrrrrrrrrrrrrrrrrr.

It was nice to see him, though.




(BTW, that shirt I bought him was designed by QuadAntics, a designer on cafepress who makes humorous wheelchair items. It reads, "This is not a wheelchair. This is a fully operational battle station.")

Rorysaurus and Round Peg's Updates

So, Rorysaurus has begun to eat again (she's still lost a lot of weight, but isn't losing more...but will only eat about half of what once would have been a meal for her)and seemed to have a good time at her birthday party this weekend. She's still not back to as potty-trained as she was, and she's up with night terrors every night (after fighting to go to bed until midnight every evening). She's having a rough time, and I can only hope that the move will help her focus on her new room, her new play-space and her new school environment, and stop having such an anxious time dealing with the fall and missing her uncle. She's got a new appointment on Friday at 10 am.

I had an appointment on today to get my other drain out (icky, icky, icky thing), and should be able to stand up straight soon, although I'll be in this binder for another few weeks. I'm nearly out of my pain drugs (unfortunately) which means soon I'll have to deal with the pain and discomfort this causes soon. I've never slept better in my life, though (due to the t4). I've got a general health appointment with my gp on Thursday...the last time I saw her she told me to relax and have less stress in my life. Hee hee hee.

I'll know about the scholarship tomorrow, BTW. I did pass my paper and my class (huzzah!), and am on a short break between semesters.

You can help!

So, we're muddling through. I'm still on some rather nutty pain medications that make me loopy (and sometimes hallucinatory). It also makes typing and just being ambulatory difficult. I did get my paper submitted, but failed it because I had failed to mention some certain specific criteria. Except I didmention that item and spent two paragraphs detailing it. So, they're re-grading.

At the doc's today I got one of my drains taken out so I'm only leaking icky red/orange goo and tissue from one bulb on one side of me. Joy! I'm still in a binder and under strict orders not to stand up straight for another week, and not to do any heavy lifting for another week after that, but at least I'll be all better by the time Little Monkey gets released from the hospital.

Needlenoggin is doing well, we're still all on pins and needles waiting to see how his Medi-Cal, CASDI and SSI applications are going, and what his discharge plan is (when he's coming home, where to, what his care situation is, etc). We've also got, right now, over $340,000 in medical bills for Needlenoggin here, and a few thousand for Rorysaurus as well. Ick.

However, you can help! I'm in the running for a scholarship (that's right, for those of you who aren't aware, I'm a full-time student right now). The contest consists of a video explaining why you need the cash and how you plan on using it. The video on youtube is here. Click the link, watch the video (or don't) and rate it by clicking on the little stars underneath the video. I'm about 60 votes away from the first place guy (who is a gold-medla winner and a world record holder who wants a scholarship so he can get check "getting a degree" off his list). Vote, please.

Target, Wheelchairs and School Drama

So, Needlenoggin is wheelchair shopping with his people in rehab. Yay! One less thing I have to figure out (although the bill will come here...they all do). He's going to need a power chair and a bunch of other junk.

By the way, if you'd like to help him out, we've started a small Target registry for him (since he now has his own bathroom and needs big towels and a shower curtain. We'll be adding on sheets when we know what size bed he has, and closet organization items (he can only use the bottom half of closets) once we've moved and can measure.

Really, really, really tired today, and I've failed my paper again (too many different reviewers) so I have to do a re-write to avoid failing out of school. Today. While on crazy pain medication that makes me sleepy or hallucinate. Well, at least the paper will be interesting...

Surgery and Stitches

So, Monday night I tossed and turned all night, and finally managed to get up at 5 am, shower, kiss the kids on the way out and head to the hospital in SF. We arrived, checked in, and then I got changed into a hospital gown and some weird leg-pressure tights like the ones Needlenoggin wears. Then I was drawn on by my doctor, and knocked out.

I only vaguely remember the recovery room but I know I was there for just a short while before getting brought in to my room around 2:30 in the afternoon. I was exhausted and nearly out cold on Morphine.


Ain't I cute?

They put me in some sequential-massaging leg doohickies to keep my blood moving in my legs, drugged me up and left me alone. I sort of dozed on and off until about 9pm when my nurse, whom I will call Fail, came in. "Time to get up," she told me.

"Excuse me?"

"Time. To. Get. Up. You've been lying down for seven ours now. Time to get up and walk to the bathroom."

"Uh...this seems a little soon, and I can't quite get to sitting in my bed by myself. When I had my C section they..."

"Blood clots. Get up or you'll get a blood clot in your brain and die."

"Are you going to help me sit up?"

"No, you have to do it by yourself. It is going to hurt, but you'll just have to be tough."

"I'm plenty tough, that's not the issue. I was just told not to use the abdominal muscles that have just been sewn together, because I could rip them back apart. Could you get someone a little bigger (nurse Fail was about 80 lbs) to help get me to a sitting position?"

"Use your back to sit up, not your abdominals."

"Um...by definition, sit ups involve the abdominals. I'll just wait until my husband gets here, and he'll help get me sitting up. Is there a reason I've got to be up and moving, using the specific muscles involved in this surgery, so soon after such a big surgery?"

"If you don't get up right now, you'll get a blood clot and die."

Now, Needlenoggin had surgery, a big one, and was in these tights and leg massagers and what-not, and at this point I'm really sure he hasn't thrown a clot and died, and I know it didn't happen within 7 hours of surgery. I try arguing with her, explaining that I am doing the leg and breathing exercises that I was told to do, and that I was pretty sure if my husband could get me to a sitting position, I could stand, although I wasn't sure I could walk to the bathroom. She reiterated her threat of imminent stroke, and told me that she'd been instructed to pull my catheter while I was in recovery ( a lie) and that she'd been nice and let me sleep these few hours, but that she was going to make me get out of bed. I told her she could wait for Tuffy, so she turned off my Morphine.

Needless to say, she doesn't get any praise for being mean and lying. The next set of nurses, Winnie and Lisa, were strict, but compassionate, and helped me stumble to the bathroom, pee, and get back to the bed. Climbing in and out was as painful as it was post-section, and worse than some parts of labor.

So, after getting lectured by Tuffy about not listening to the nurses, since I apparently should have done back-sit-ups and gotten up and walking, I got a few hours of sleep. The doctor came in and okayed my discharge once I was taking the oral pain drugs, and then we tried to call my wonderful driver-friend, Becca. However, my phone wasn't working (died in the hospital), Rorysaurus was making Becca late, and Tufy was at work and sounding peeved at being disturbed. So, we waited outside the emergency entrance (not marked at all) for 1/2 an hour until the chair-pusher told me I'd have to come inside and wait for my driver to arrice, park and check in at the information desk before they'd let me go.

Riiight. My driver had my two, small, squalling kids in the car, and she was going to go pay to park across the street, unload them, come in and find the right desk by magic, and get me, and then trundle us all back out to the car. I told the guy I'd just wait outside in the chair, and he told me he'd been waiting for half an hour, and wouldn't wait longer. "Do you have someone else to go get?"

"No, but this is taking too long. You go inside now."

"I can't. My ride will never find me. I'll wait here. She's on her way, and then I can just get in."

"No! You go inside now. No more waiting outside." At that point, he tried to wrench the chair around so he could push me, even though my hands were on the wheels. I won, as I'm a lot stronger than he'd guessed, and threw on the brakes. He undid one, and I re-did it as he went all the way around me to undo the other brake. Then, he went for backup.

Out comes security guard #2. "You've got to go inside until your ride arrives."

"My ride is on her way, with two small children in the van, to a hospital she's never been to before. She only knows the name of the street that this little parking lot is on, and won't find it if no one is out here. My phone is dead, so I can't call her and give her more clear directions, and she won't even know to come in to any desk. I'd like to wait a little bit longer."

"No. You have to go inside. If your ride never gets here, we'll get you to call someone else. What if your ride never comes?"

"What if you out me inside where she never finds me? I'll stay out here." This forced these two men to begin planning how best to wrench my hands from the wheelchair wheels in order to force me, against my will, back into the hospital. Luckily enough, that's when Becca came to the rescue.

So, we got home, and Becca cooked for us, and Rorysaurus' Godmother Annie arrived, and a good time was had by all. However, Wednesday night, I tried to lay on my side in bed to feed Little Monkey, and tore out some stitches. See, here's the injury:


(a hip-to-hip cut...icky, I know)


This is where the drain attaches on my right side. When the stitches tore, the opened up a hole in me about as long as my little finger, and just as wide. Hurt like hell, so I used paper-tape and closed it. Then I made an appointment to go in and see the doctor on Thursday morning.


The bulb there is collecting about 260 ccs of icky bloody fluid a day...

So, we drove out at 7 something on Thursday morning and got me 10 stitches (without pain killers) and I was told how to pull out the anaesthetic pump that was left in my guts sometime today when it runs out of juice (just pulled all 3 feet of tubing out of my belly). I hurt like hell, and the kids just want to be held and loved and poor Tuffy is getting the short end of the too-exhausted-to-move stick, and I can't get in and out of bed by myself.

Becca has gone home (flew all the way here from Seattle so she could help for 2 days), but Annie is still here and so is Tuffy's little cousin.

Birthday and Bureaucracy

So, Today is Rorysaurus' third birthday. Crazy. However, since tomorrow is my surgery and she's got PTSD therapy today, we went to see Needlenoggin yesterday.



It was a weekend, so the center was understaffed, and it was hard to get people to help get him in his chair. We were there for two hours before he had his blood pressure medication and got into his chair, which was frustrating to say the least. The kids were both ready to go home by the time he even got out.

Eventully, though, we were able to eat lunch, go for a roll around the grounds and have cake. We got to sing to Rorysaurus as well.


(Yes, that is a homemade Batman Beyond cake)

(Needlenoggin and Rorysaurus seemed to like it).

Then we packed back up into the van and headed home. i won't be seeing Needlenoggin again for over a week, since I've got surgery tomorrow.

Here's my biggest irritation. There's no one in charge of all of this crap. The Center wants to send him home on 9/2, but no one has called us to tell us that. At the hospital, we were told he'd need a regular bed, but the Center has told Needlenoggin that he'll need a hospital bed for the 6-8 weeks he's home, and who knows after that. Oh, and because of his neck-brace, the wheelchair he's in at the Center (which may or may not be coming home with him temporarily, whenever he comes home) makes him FOUR INCHES too tall for a standard wheel-chair van. They are supposed to hold a family training and a transportation class for us *sometime* before he gets out, but no one has told me anything at all yet, and I'm the one trying to make sure he has a roof over his &#@%ing head and someone capable of caring for him when he gets home. In Home Support Services should be providing him with a caregiver, but he needs CASDI (California State Disability Insurance) and SSI (State Supplemental Income) and his Medical clearance before that can happen, and those papers should have arrived a week or more ago. Who is in charge of this nonsense?

Each state should have a book of the people to call to get his figured out. While I'm not really one for government intrusion, I'd happily pay more of my taxes out if I could talk to one central paralysis person and get all this crap straightened out.

/rant

Alright, now that that is out of the way, I'm going to go feed Little Monkey and pack up for tomorrow. Big day and all.

South Bay Spinal Center

So, we went down to visit Needlenoggin last night, and went through the whole process of loading the kids in the car and heading down to San Jose. We got there around eight o'clock in the evening, and (thankfully) had no trouble at all signing Rorysaurus (and Little Monkey) in as visitors. In fact, the nurses were thrilled to see Rorysaurus, as most of them had heard some version of the story before.

So, we got into the room, and plunked her down on the bed next to Needlenoggin. We got this picture (which aside from the AWESOME Batman cape, is a lot like all our other recent hospital photos):


Special thanks for that Batman cape are due, as our upstairs housemates sewed it for her as a birthday gift. I'll have to get a good picture of her with the reverse side out...too cool).

Then, the nurses had to do nursing stuff, and we headed out to the day-room to wait. Imagine our surprise when we were greeted at the door by Needlenoggin himself, ready to take us on a tour of the place.


(Note that Little Monkey is actually on my back, but cannot be seen)

So, Rory got up on Needlenoggin's lap, and we tooled around.





Oh yeah, he's awesome. So, he showed us the gym, talked about the very cool support group they'd had on Monday, and drove us around the outside of the place back to our car. It was lovely at the center, and we got to see our first helicopter landing as a Medi-vac came into the helipad there. We've got a bunch of logistical issues (like the fact that they want to split his rehab (due to the broken arm) and so want him to come home 2 weeks before I have a place for him to go), but the visit was fantastic.

He said he's lost some of the sensation he'd gained back at the other hospital, and that his right side it totally and completely numb. The left side remains the same except for some sever pain from a pinched nerve in his hip. We'll have a better prognosis on the broken wrist in a few days. He has a new neck-brace-collar-thing, which works better but is apparently much less comfortable.

He is, however, up for hours at a time now (4 to 5) and went out to a restaurant for dinner with some of his new buddies (they had ribs at a local BBQ joint).

He can even do tricks!



Anyway, everyone kissed him goodbye:



And he made (at my insistence) a cheesy "Hi, Mom" video.



So, there you have it. I've got to reschedule Rorysaurus for her next PTSD appointment (still whining and bed-wetting, but she's finally eating again) and make a bunch of phone calls (most of which I can also do from bed next week).

Can we fit one more in?

Surgery, that is.

Okay, here's the basic story. When I was pregnant with Rorysaurus, I got huge. I didn't gain a lot of weight, but was unable to drive near the end, because my belly prevented me from reaching the pedals and the steering wheel at the same time.



I worked my butt off and lost all the weight but still was having a hard time fitting into my regular clothes. Oh well, whatever.

Then, I got pregnant with Little Monkey. By 15 weeks, I looked like this:



And by 32 weeks, I was using a cane, wearing a belly brace and had still only gained 15 lbs. I was here:



Turns out, when the Rorysaur was in there, she tore my abdominal muscles apart, so there wasn't much holding Little Monkey in. This made it even harder than it would have been otherwise to get him out, since my abs couldn't do their job, and was the cause of the really bad back labor I had with both births.

I was expecting it to go back to normal afterwards, but my swayback and back pain got worse and worse, and I was cautioned not to lift anything over 25lbs. I was ready to ignore it. However, when doing a sit-up, my midwife could fit her whole little hand between my abs, and could feel the intestines underneath so, my GP and I found me some physical therapy and I joined a gym, and got stronger and lost a lot of weight. No progress on the diastasis recti, though. In fact, if anything, it has seemed to get worse. I can't stand up straight, and my back just aches. The GP finally told me to go get a surgical consultation.

So, back in early July, before all of this new drama started, I scheduled a consult. In desperate need of a few hours of peace and quiet, I left the midgets with my friend Kristin (here from out of state to watch the kiddos and help pack), andheaded in to San Fran for the consult. We (the GP, surgeon and I) had been figuring on the surgery sometime this late fall or winter, but two pressing things had happened since then.

1) Little Monkey is 22lbs. This means the amount of time I have where I'm not further injuring my back has shrunk a little, and

2) I'm going to need to be able to help transition Needlenoggin from chair to bed to other chair. Not necessarily all the time, and it won't be that I'm lifing him myself, but I will be helping move someone much larger than my 22lb son and 36lb daughter.

The surgeon wanted me to do the surgery with enough time before Needlenoggin's return to be back to normal activities, but, she was booked until November. So, I went to the assistant's office and started the scheduling process. Then, low and behld, a cancellation! So, my surgery is a week from today. 8/19.

I'll be in the hospital in SF for a night, and then come home to nearly bedrest for a week (only some light walking, no lifting (even of the kids)). I'll have drains in for a while, and will have to do all of Little Monkey's care in bed. However, I will have Tuffy's cousin here to help with the Rorysaur, as well as (possibly) Rorysaurus' Godmother. The week after that, Tuffy should be off pending Little Moneky's surgery, and then the big Neurosurgery itself. Then we'll be taking a week off to move into the new place, and then Needlenoggin should be arriving home.

Nuts? Yeah,of course. However, I'll have a little help, hubby will be home some and my mom will be up for a little bit as well, and when else would I be able to get so many people in here to help us?

Finally some good news

So, Friday morning Rorysaurus, Little Monkey and I managed to get into Needlenoggin's hospital room. It wasn't easy, as they have a "no visitors under 14" policy, and Rorysaurus was a) dressed as Batman and b) wearing red leather clogs. However, his doctors and nurses knew we were coming and all managed to be looking somewhere else when we arrived. :)

Anyway, we got a chance to hang out and see Needlenoggin before the EMTs were scheduled to arrive. Unlike the last few times when Rorysaurus has been a little hesitant, this time she very happily hopped up in the hospital bed with her uncle.



They were thrilled to get to cuddle and watch a movie on his DVD player while we waited (a special thanks to his work buddies who brought him that and the DVDs he watched throughout his hospital stay. It allowed him some entertainment in the ICU and saved him from telenovelas and bad game shows in the TCU).



It was good. The EMTs showed up, told him they'd let him watch movies in the ambulance, and laughed and joked with him. Once the guys heard what he's done, they told him he should work for the fire department! He was all smiles as Rorysaurus kissed him good-bye and he headed out to Santa Clara. When told Little Monkey would miss him as well, he rolled his eyes in a good-natured fashion, so nothing has changed there.

My Fairy Godmother (she's magic and grants wishes) arrived right as they were wheeling him away, and she hopped in the car with us as we headed out. I really need to express my undying thankfulness to her and to Crystal, my good friend from high school, for coming up here. Godmom has two kids of her own and a job, and flew up for the weekend, and this week simply wouldn't have been possible without Crystal. She's just gotten over the worst year ever (as bad as ours has been, maybe) and flew all the way out here from Florida to watch the monsters so I could get back and forth to the hospital and run errands.



Then we were off to Rorysaurus' PTSD appointment. She worked really, really, really hard, taking toys off of shelves and throwing them on the floor, and tucking everything in sight under a blanket to "help them get better." We then went over the whole story of her fall, and reminded her that it wasn't her fault and that Uncle Needlenoggin was happy so she was allowed to be happy and play as well. The "not your fault" meme really stuck with her, and she's been repeating it. She also told the doctor that her uncle "bwoke his back in five pwaces," so at least we know she's listening, right?

We got some suggestions for home, a diagnosis, and another appointment for Monday. Then we came home, slept and made about a dozen phone calls about places to live. Wheelchair access is really, really sketchy in older places, and newer ones are just so expensive. This is the Bay, so most 3 bedroom places are $2000 a month anyway, and if you factor out walk-ups, you're looking at a $2500 average.

Right before bed, Tuffy finally got home from work, and Rorysaurus' package arrived in the mail. We unpacked it and, presto! a chair for Lizabeth!



Rorysaurus spent the rest of her night wheeling Lizbeth around the house, putting her in bed, and checking her heart with clips and wires. Maybe she'll grow up to be a doctor?



Saturday dawned way too early, but we were up and running with the last of our coffee. Despondently, I refreshed craigslist, and started up my so-far-utterly-futile apartment search. I opened up a half dozen ads, and started writing my 56th email. I'd sent out 50 over the last 2 weeks, and made more phone calls than I care to count, and had recived back three responses. So, when I opened up the ad entitled "3 bedrooms in Emeryville for $2300", I knew I was in for yet another converted Victorian with skinny doorways that I'd have to retrofit for Needlenoggin.

Instead, I found this:



Whaaa? So, Tuffy and I drove over and did the application. This place is way out of our price range, but then again, so are all the first-floor apartments and ones in elevator buildings. This one has a court-yard and a pool and BBQ area, and a bathroom with a shower that Needlenoggin can roll into. Of course, Tuffy and I actually looked at this building a few years ago and couldn't afford it, so we were hesitant. We applied, because we have enough in savings that we had planned to use for Rorysaurus to go to preschool and to pay for my teacher's credential that will cover the difference.

It is four blocks, maybe five, to Needlenoggin's job and 6 blocks to Tuffy's. Emeryville is also flat, so biking is way, way, way easier than living in Oakland.

Here's the floorplan:



And...

It looks like we were approved to rent the place! So, now we will at least be able to have a home for Needlenoggin for the next 12 months. The buildings, courtyard, elevators and the apartment itself are wheelchair accessible and they're familiar with service dogs (which we will probably end up with). So, one problem solved.

Oh, and talking to Needlenoggin at night, I was told he's really working his booty off in rehab, and was able to sit up for 40 minutes in a chair. They have support hose and an abdominal compressor that keep his blood in his upper body (so he doesn't pass out) and he spends an hour on and an hour off every day doing PT from 8am to 5 pm. So, he's progressing well!

Moving on out!

Well, Needlenoggin's doing as well as can be expected. He's moved in to the TCU, and is working his numb little butt off. :)

Most exciting is the news that on Tuesday, they sat him up, and told him they were hoping he'd be able to sit for 90 seconds. He did it for 4 minutes. Wednesday, he even was able to sit upright in a chair for 15 minutes! He also is sore in his abdomen from all that balancing upright, which is good, because at least he's feeling something. We're still hoping that he'll regain all of his sensation.

He's doing so well, it looks like they are going to transfer him to the Spinal Cord Injury Program at Santa Clara Valley Medical Center. This is the premier center for spinal injury in the state, so we're more than thrilled that they have a space that fits him.



The only issue I can see about the Spinal Center is that they don't seem to allow visitors under the age of 14. 30-60 days without seeing Rorysaurus would be very, very hard on Needlenoggin, so keep your fingers crossed that there's a way around that policy (having him meet us in the lobby or something). If worst comes to worst, we'll try and set him up with SKYPE (a webcam service) there, and have them talk that way, but I know he loves her hugs and snuggles.

All the center needs us to do now is find him a home to discharge into. ::sigh::

Needlenoggin also has a benevolent account set up through Washington Mutual, now. What this means is that anyone can go into any Washington Mutual in the country and deposit money into account # 3171400381, and it will go towards the van, mobility equipment, wheelchairs and his drastically increased rent. Donations can also be mailed to the Washington Mutual Emeryville Financial Center at 5747 CHRISTIE AVE
in EMERYVILLE, CA 94608-2412. Just include a note saying that the money is to be deposited in account # 3171400381. The donations aren't tax deductible, but they are appreciated.

We took candy (provided by our friend Jessi's mother-in-law, Carol) to his ICU nurses, and took flowers and milk-chocolate seashells to his FANTASTIC surgeon, warm doctor and favorite nurse. He signed all their cards with his left hand (since the right is broken) and while rudimentary, the writing was legible.



Rorysaurus and I (with help from our babysitter) got Fabric paint and made him a shirt for his transfer out to the rehab center, since he'll be leaving tonight or tomorrow and has to wear clothes again. :)



And a special thanks to Fr. Al for his loan of Beethoven the doggy-puppet. Needlenoggin is pleased and amused that he has such a soft little animal to love.



Please keep all of the works-in-progress (we're trying to visit a new apartment this week, and our folks are supposed to look at a van in the next few days as well) in your thoughts and prayers.

Good news

Hooray! I am happy to report that Needlenoggin's spinal drain is out! As of sometime tonight, he'11 have been moved to the TCU (Trauma Care Unit), where there's a little more room, fewer beeping machines, and a TV. Still, I'm sure he'll miss the ICU...his room is so awesomely decorated. Notice a theme?



Rorysaurus has been scheduled for her first PTSD therapy appointment on Friday at 11 am. She's begun climbing into my lap to tell me that she's a baby, and pretending to act like Little Monkey. She even drooled on the floor to make her point. :p

Oh, and checkout the video. Most of thse movement is involuntary but two twitches are him busting his butt.

Good news, bad news

The good news is that Needlenoggin is doing well in that he is in higher spirits than ever and far more coherent. The “ICU psychosis” seems to have passed, and while he is very sleepy and in come pain, he is ready to get off of the ICU floor. Next, they said they will move him to the TCU, and then it will be off to rehab in a week or so. He has minor sensation in parts of his lower legs (if poked hard enough, he feels the pressure on his muscles as warmth), and has some reflexes when pinched and poked. Also, with much straining (enough to break a sweat over the course of nearly 5 minutes), he is able to twitch one toe on his right foot a millimeter or two (!!!!!) They are hoping to take out his spinal drain today and move him in the next 24 hours.

The bad news is that Rorysaurus isn't doing so hot. She still is refusing food most of the time, and isn't sleeping in any kind of a normal manner. Her re-enactments of the accident are getting scarier and more upsetting (they now involve loud “breaking” noises, and she talks about blood and “owies” constantly). She’s also still not sleeping correctly, and has gone 16 or 20 hours at a stretch without eating. I still haven’t sent her back to school, because I’m afraid she’ll be too much of a nuisance, and that she’ll be too scared, whichmeans she is home allthe time, and whining or crying unless she's got Plaza Sesamo or Blue's Clues on. :( I am really worried about her.

Diapers!

Wow. Bay area people are the best! We can't do laundry right now, so we've stopped using the cloth diapers temporarily. However, they're expensive, so we put up a request on freecycle (like a free craigslist that tries to keep stuff out of the landfill) asking for diapers in size 4 or 5. This is what we got:



I'm amazed at the lengths perfect strangers will go to for folks in need.

In Needlenoggin news, he's awake and feeling much better. He was asleep when I went today, but woke up, talked about housing plans, and smiled at the silliness of Rorysaurus' latest song. High spirits and no hallucinations, although it seems he was hearing a few sounds that weren't there earlier today, his nurse reported. Not bad, all things considered.

Oh, and Rorysaurus has decided that she can save things from falling by "airbending" (a term for elemental magic from a show she watches with Needlenoggin). Very cute to watch her tr to move the air to her will.

I was telling a friend today that in our home alone, this year, we've seen more surgeon's bills than the average cost of a home in the US, and close to what my grandmother's Souther California home sold for just a few years ago. Bring on Universal Health Care!

Awww, thank you Reebles!

The donation sites for Needlenoggin and Little Monkey are hosted at Reebles.com. Well, on their main page, Reebles has a link to their corporate blog, and they've picked up the story and have it as their top blog post here.

Needlenoggin's reflexes continue to exist, and he's able to feel pressure, if not touch, in a few points on his lower half.

Rorysaurus is throwing up bile (probably due to her refusal to eat), but is otherwise the same. We're trying some soup tonight.

Wish us luck on the home/van/wheelchair hunt!

Bad headline

So, the headline at OaklandTribune.com reads: Family blames landlord for accident that paralyzed man. However, if you read the article (well written by Ms. Woodall), you'll notice that none of our statements say anything to that effect.

However, in the real paper, the article is titled "Hero Paralyzed; Man falls as rotten landing crumbles." Weirdly enough, the type is exactly the same. Here is what the newspaper article looked like:

Doesn't Tuffy look great? Anyway, we're getting a copy framed for Needlenoggin, and sending a few to family as well.

Update on NeedleNoggin

Tuffy bought Rorysaurus a ukelele, and she wrote a little song for Needlenoggin on it. It has become instant "music therapy" as she's constantly writing songs (many of which are VERY morbid) and dancing around. Getting it out is good, right? Here she is playing (notice the mention of "cuts and bruises") for him.



Also, when visited last night, Needlenoggin was aware and lucid and devoid of hallucinations (yay!). He laughed at Red vs Blue and enjoyed Rorysaurus's little song. He also was quite taken with his news story.

And, if you pinch his toes, his calves twitch. It is spasmodic and he can't feel it, so we're only talking about maybe a reflex, but still, that's something. Hooray! He hugged Tuffy and I when I left and made sure to ask about the Oakland Tribune article that will be out today. Don't know what that says yet, but hopefully it'll be complimentary. he wants it framed.

Oh, and two notes:

Yes, the lawyer knows I'm blogging, and save things specific to the lawsuit, he doesn't much care. Thanks for the heads-up. :)

Thanks for all the support on therapy for Rorysaurus. I do know it is good for her, but there's just something odd about therapy for a preverbal kid. Then again, I know that is my wry amusement, not a good reason to avoid it, so she goes in for her referral tomorrow. She's had a really rough month, and if singing and painting (while I get a quiet 30 minutes in the waiting room) is what she needs, I'm all for it.

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.

::sigh::

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.